Socially Inappropriate

This innocuous phrase has turned obnoxious for me. Here’s an example of why: I’m reading a book about teaching social skills to children with Asperger’s and I come across a sentence stating that children should be allowed to time to engage in stress-reducing activities, including “self-stimulation in socially appropriate forms.”

What sort of stimming is socially appropriate, you may wonder? The book doesn’t say. Presumably everyone knows? Later in the book I find a clue. There is a list of sample relaxation activities that children can try as a way to de-escalate their stress. One of the activities is “rocking in private.”

Does that mean rocking is socially inappropriate? I assume so, since it’s meant to be done in secret only. How about flapping? Bouncing? Spinning? Playing with a stim toy? Rubbing a surface? Staring at a moving object?

Where does the line between socially appropriate and socially inappropriate lie? Who decides?

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Actually, the idea of an adult thinking a child is complying with the rule that they are only “allowed” to stim in private is kind of funny.

Is the child chewing on something, manipulating something with their hands or fingers, touching something, kicking their feet, clicking their tongue, chewing their lip, rubbing their blankie, petting their favorite stuffed toy, sniffing their food, fisting their hands in their pockets, twirling their hair, watching the ceiling fan? All forms of stimming.

When I read some of the ways nonautistic people talk about stimming, I swear this is the definition they have in their heads.

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Oh, wait, I know: socially inappropriate stims are ones that draw attention to us. If you rock in public, people will stare.

And whose problem is that?

Try out these sentences instead:

If you sign in public, people will stare.

If you use your wheelchair in public, people will stare.

If you limp in public, people will stare.

If you use your assistance dog in public, people will stare.

And if people do stare, other people will think they’re rude. Who would tell a Deaf person not to sign in public or a paraplegic not to use their wheelchair in public?

But people tell autistic kids not to stim in public all the time. Again and again I see conversations and articles insisting that stimming–or if they’re trying to be politically correct, certain types of stimming— isn’t appropriate public behavior.

Really? And why is that? Who exactly does stimming embarrass? Not the autistic person who’s doing it.

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Stimming happens. It’s not something autistic people choose to do.

Controlling it is like playing whack-a-mole. Stop it over here and it’s just going to pop back up over there. Whack it enough times and it’s going to go underground and rip up your entire yard.

Oh man, I almost addressed that because I’ve seen people bring it up as a defense against the argument that I’m making. But, you know, public masturbation is universally inappropriate so I have no idea why it gets raised in discussions of autistic behavior.

There are going to be some autistics who do not understand why masturbation is inappropriate, though. Especially if they are young children who have not been taught about sex. And this is why I believe that sex ed. is important. We need to have child-friendly ways to explain it rather than withhold it from them until they are pre-teens, especially since NT children manage to find out about sex early on through their peers anyway.

Oh this is brilliant! An angle I hadn’t thought of. It wasn’t an issue for me growing up because both my parents are very sex positive so I never had to rely on teachers for sex ed. But that isn’t true for a LOT of children, especially in more conservative countries than the Netherlands.

I think that’s true of all children, autistic and nonautistic. I had a friend who had to explain to her nonautistic daughter that masturbation was a private activity, so it’s not solely an autistic issue or one that is appropriate to lump in with stimming in general. I agree that sex ed. is important and I think that all kids need age appropriate sex ed. I wouldn’t, as a parent, leave it up to my child (regardless of neurology) to find out about sex through their peers or other sources. There is actually a great resource here for talking about various self-care issues with autistic teens: http://www.autismhelp.info/teen/sexuality-puberty-and-hygiene/categories,id,450,1-1.aspx (I’m working on a post about this as well)

I think my parents were particularly afraid that I would inappropriately talk about sex if they told me about it too soon. I was a very curious child who would ask lots of questions and tell random facts to strangers. When I learned about homosexuality, I ran around the school telling everyone, “Did you know two boys can get married? It’s called being gay!” I did not know anything about the actual sex process until I picked up an encyclopedia that summer, and even then, did not understand its cultural significance. My naivety bit me in the ass the next year. A group of girls decided to egg me on, getting me to dance in explicit ways, and watch me say slang terms that I did not know the meaning of. It was really humiliating after I realized their sneaky intentions, even though I knew that those girls were cruel. I guess I wanted to think that they finally liked me, after laughing AT me…but that is a whole different matter from ignorance about sex.

I was given a children’s book called where do I actually come from? when I was maybe 8, and I did start asking men (only relatives, who still remind me of this in my mid thirties) if I could go to the toilet with them to look at their penis.

I am still glad my parents decided to teach me early on, but with hindsight that could have gone horribly wrong.

I couldn’t agree more! The phrase “socially appropriate” has been the bane of my existence.

I ran an informal experiment last month: I would allow myself to engage in whatever physical urges I felt regardless of whether it was “socially appropriate.” I wanted to see if these physical releases i.e. stimming affected my overall performance. It did. Positively. I had much netter focus, could deal with people for longer, solve problems faster.

I have drawn the following conclusions:
1. That’s why they have doors on offices-so I can spin and rock in my chair, hum loudly, tap the table constantly etc. I can close my door or better yet you can close yours.

2. I can’t help the overwhelming urges I get and attempts to suppress them only makes louder and harder to control. I am not as likely to meltdown mid-conversation if we can all agree that snapping my fingers constantly or tapping my hand off surfaces is not a big deal. It helps me focus. It also makes me feel safe when I am overwhemed by sensory input. Instead of exploding, imploding or unexpectedly retreated I can focus on that small motion and use the sound to keep the rest of the noise at bay.

3. If you don’t like it, leave. I am not ever embarrassed by the stuff I do. If you are when I am around, then you can leave. My truly great friends not only don’t care about my quirks and fidgety behaviour they are not embarrassed when this behaviour is manifested publicly or otherwise.

After spending a lifetime trying not to do these things I was like nitroglycerin-ready to explode at any minute. Why shouldn’t I be entitled to calmness?

I am also convinced it is a reward. If I sat though your meeting filled with bureaucratic politically correct babbling for an hour and was quiet and still, then yes I get to skip all the way back to my office an spin in my chair for 5 minutes. It will be really easy for me to do that meeting thing knowing I can have all motion I want when it’s done.

So I have to agree really emphatically with your analogy to physical disabilities. No one would tell sign language speakers their native tongue was “socially inappropriate.” No one would consider it acceptable to be embarrassed by the different motions of manual/electronic wheelchairs, canes, walkers etc. So why shouldn’t I move differently too?

The conclusions from your experiment are fantastic and make a lot of sense. Thank you for sharing them in detail. I think they make a great case for stimming as a work/school accommodation and really drive home the point that stimming is something that makes us more comfortable, not less.

“If you don’t like it, leave. I am not ever embarrassed by the stuff I do.”

Yes! The way I move, my verbal stims, they all feel very natural to me and at times are a source of great joy. I’m not embarrassed by them (until someone else points out how “weird” something is or reacts negatively, and then sometimes I am).

Perhaps we’re simply behind the acceptance curve. FDR got through his entire presidency only being photographed in his wheelchair a handful of times because he thought public knowledge of his disability would weaken his political stature. The idea of a public figure concealing a disability like that today just seems absurd.

I did not know this about FDR despite knowing many of his political contributions. Thanks for the info. I will using with the many other examples of success and disability I use when teaching.

And yes sometimes I would get embarrassed when other pointed out my “weird” behaviour. Now I laugh out loud at the absurdity of it. To those who launch into a rant I point out that they often engage in fidgety behaviour when they are nervous/scared/upset. They are simply upset by different things than I am.

If you Google FDR and look at the photo results, you’ll see one famous shot of him in his wheelchair and many many photos of him either sitting at a desk or standing at a lectern, which we was only able to do if he kept at least one hand on the lectern to support himself because he wasn’t able to stand without support. I knew that he used a wheelchair, but it was only as I was writing this that I read more extensively about his background and the lengths he went to to conceal his disability from the public eye.

And I’m working on the not being embarrassed ever part. Practice makes perfect, right?

problem I have is when I’m already overloaded, any extra noise pushes me over the edge. it’s not about embarrassing or appropriate, it’s too much sound (clicking, snapping, slapping). It makes me want to screammmmmm

Good for you! We all have things about ourselves to figure out and dial-in. I’m glad you are able to find things that work for you. However, I am endlessly annoyed by this thought: “I can close my door or better yet you can close yours.” Can you explain to me why I should have to close my door because you need to make a bunch of noise? Have some respect and shut your fucking door. This is just common sense to me. If I’m in my office and my favorite song comes on I do not just turn it up for the whole building to hear, I close my door so as not to disrupt anyone. I want to hear the song. I want it loud. COMMON SENSE AND BASIC RESPECT says if you are the one making noise than you should be courteous and close your door.

While I agree in general that it is polite for the person making noise to close the door, I think the author is trying to bring attention to two other important points in this example.

1) Listening to music is something you do by choice. Making noise as a stim may be something a person NEEDS to do, or would find painful to not do. Yes, it’s polite to do it in the least disruptive way possible, but at the same time, the fact that it is a genuine need should be respected, and needs should be given priority over preferences. You wouldn’t, to extend an example given above, ask a disabled person user to stay immobile just because their powerchair is annoyingly noisy. If the noise bothered you, you would make an effort to distance yourself from it.

2) This leads to the second point, which is that there’s a power dynamic at play here. People with disabilities or other differences are already asked to hide or repress so much about themselves– women are asked not to dress too appealingly because it’s “distracting,” ethnic minorities are pressured to speak in as “white” a way as possible, homosexuals are censured for acting in a way that reminds others of their sexuality… and disabled people are asked to minimize expression of their needs for the comfort of those around them. It’s not about this specific example– it’s about a larger pattern of who is expected to do what, and why.

So: all things being equal, the person making the noise should shut the door, yes. But all things aren’t equal in this case.

You hit on an important point that I was actually trying to make: it’s not about who’s being “rude;” it should be about meeting people’s needs. I’m actually also a person who can’t think when there is noise– I even find the sound of people talking painful at times! So I carry noise-blocking headphones for when I need silence.

The point is, our need for quiet and someone else’s need to make noise are both equally valid access needs– even if they are opposite. There are people who can’t think if they are not stimming, and it makes them cry to try and be still and silent. The ideal workplace, school, etc., would provide solutions for us both. And yes, it can be very hard to find solutions or situations that work for everyone.

Sometimes compromise means accepting my own discomfort for someone else’s sake. Sometimes it means I have to accept that I am making someone else uncomfortable. Sometimes it means I have to take the time and energy to advocate for a particular venue or event being made more accessible for me. Sometimes it means I choose to avoid certain situations altogether, because they just can’t work for me no matter how much effort others put in.

But ideally, if we’re all honest about what we need and open-minded about how to meet our needs, we can all get along with respect and kindness.

exactly what I was saying. it’s NOT always about rude, or self absorbed, or self righteous, or uncaring, or prejudiced. Let’s stop attributing motive to people who have different needs than our own, and move on to assuming no one is purposely being a jerk, so how can we work together to create the best situation we can. The more we try, the better our solutions will get.

Yes this is exactly what I mean. In most cases if not all I try very hard to be accommodating to others. There are days when I can’t handle noise at all so I have ear plugs in all day. The point I was getting at is that everyone, autistic or otherwise, has annoying habits, preferences, and behaviours. The idea that there is a “socially appropriate” is what I am attacking. People should be themselves and to the greatest extent not harm others. The point I was making is that the construct of socially appropriate is extremely harming to many: those with disabilities, those of different races, those of different gender etc.

The point is that there has been a persistent trend towards homogeneity. This is harmful as it is firstly, an artificial construct that doesn’t exist, and secondly this same construct has been used to play “us vs. them” for millenia. As it is humanity’s oldest and most dangerous the consequences for being cast as other are severe. We are all of us unique and must learn to respect differences.

Would I shut the door if I was disturbing someone? Absolutely. The question was really whether I am disturbing, as in disrupting your own needs, or whether in reality I am beling ripped apart for being different, in which case I will not. I will no longer agree to live in a prison built by others on shaky ideology. I will be me, no worse or better than and I will let you be you.

60 yo man here who plays with his dog in the park. When it is just the two of us I prance and spin like a 10 yo girl. I love it. (yes there are many neighborhood homes from which anyone looking can see us. 🙂

I’ve suppressed so many stims that I can’t even remember any of them, except the absolutely obsessive hair twirling that I used to do as a child (which I “grew out of”, aka was shamed out of doing). The only things that I still can’t stop doing are nail biting (mostly the nail beds) and nose picking. I’m 36. I should be able to stop picking my nose in public. I know how to check whether anyone is watching me. But I simply cannot stop picking my nose if something is obstructing it.

Actually, my partner told me the other day to stop biting my nails while talking to him. I gave him a pretty long lecture about WHY that was such a harmful thing to concentrate on. What would he rather have, me having enough executive function to pay my bills, or me not annoying him by biting my nails? Such a stupid thing to “fix” when autistic people struggle with so much more which is actually harmful to their life.

Good for you, letting him know that there’s more to your nail biting than simple a “nervous habit.” My husband pretty much leaves my stimming alone, although he as been known to try to join in occasionally. Which is funny because he does it all wrong. 🙂

I was a champion hair twirler, which most adults attributed to my naturally curly hair and a nervous disposition. My hair is too short now to twirl so I rub the longish stubbly parts instead.

It’s funny how our stims seem to choose us, whether we like them or not. The one I’d most like to forget is skin picking because like you, it’s something I feel like I should be able to control but it’s mostly a losing game.

I skin-pick as well. My most usual sensory stimulation habit is massaging my scalp… but if I find dandruff I tend to pick it. (in public I try to avoid it). I have other fidgeting habits which I learned to stop avoiding so much in my present job. It’s an intellectually demanding job in a distracting environment (embedded software development, large team, semi-open space) and it’s much easier to concentrate if I allow myself to fidget or massage my scalp or bounce my leg or some other thing. There are actually a lot of people who do some kind of characteristic fidgeting (I am not sure this is the word, English is not my first language). I have found that this environment full of engineers is much more accepting of the small things each person needs to do to be productive, and so I’m learning to stop fighting the harmless fidgeting (not the skin-picking, though).

It’s cool that you work in an environment that’s most accepting of everyone doing their own thing. I would imagine there might be a higher ratio of autistic people among a group of engineers than in some other work places. I majored in economics and I swear most the graduate students and a big portion of the undergrads were on the spectrum. We were all a little too into math jokes and statistical analysis. It was nice to be around people who were as content with sitting quietly before class as they were with someone infodumping.

Actually, I strongly suspect there is a higher ratio of, not only autistic people, but of generally neurodifferent (so to say) people. The stereotype of the programmer who hates sunlight and blocks noise with noise-cancelling headphones is based in reality, and I see it every day (I hate strong sunlight much more than I hate noise, though noise can be very distracting). There is actually a guy whose neurodifference generates clearly different behaviours, and though we look and sometimes react (these behaviours are sometimes noisy and we startle), nobody disrespects him, as far as I know. Anyway, back to the point, I am much happier here than in an environment where people are more typical. And infodumping is a delightful activity, most of the time.

I would also add that engineering and programming environments seem to be far less sexist than other environments. I notice getting treated by my (predominantly male) coworkers on my ability to solve problems and the quality of my work, not on my gender. Project managers and sales people (both male and female), on the other hand… When they’re not condescending or simply assuming I can’t do the things I say I can, they’re saying I’m not really a woman. I’ve LITERALLY been called “a third gender”. To my face.

Oh, wow, that really takes the cake. I wouldn’t even know how to respond to that kind of statement.

It’s cool that your coworkers respect you as a person and see past gender. Ironically, I’ve found that in predominantly male environments, there is often less sexism than in more mixed environments. I was involved in martial arts back when a typical class was 15 men and 2 women and I encountered very little sexism. The guys expected me to live up to the color belt that was around my waist but I practiced fanatically so that was never a problem and they all seemed to respect that. The same was true of upper division econ classes (m/f ratio was often 10:1) and the shooting range.

I frequently see conversations about knitting during meetings and such things–I’ve found it interesting how many people report that having something to do with their hands helps them concentrate (during my school days it was doodles. I tried a few times not doing that–I was more apt to totally space out without that slight distraction). It seems pretty common to need to fidget in some way, on the spectrum or off, just culturally we seem to have this idea that if you’re not giving your full attention to something, you’re not giving it any attention. IME, few things truly take my full attention, and the part that’s not being used is apt to hijack things and drag me off into Imaginationland if I don’t find something to do with it.

“IME, few things truly take my full attention, and the part that’s not being used is apt to hijack things and drag me off into Imaginationland if I don’t find something to do with it.”

Yes! When a class is boring (i.e. requiring much less than my full attention to keep up with) doodling occupies enough of my mind to keep me from completely tuning out. If I don’t need to be taking constant notes, I need something to keep my brain and hands occupied or they just go off on field trips.

As a teacher many decades before anyone was talking about ADD, Autism or…….., I noticed that some children simply had more than one channel operating simultaneously and if they weren’t allowed to do something non-distracting to others to keep both channels occupied, they might still learn, but no one around them was going to be able to concentrate. There are innate differences and those vary greatly in degree. At the point where the multi-tasking or stimming becomes destructive to the learning environment, an accommodation needs to be found that meets the different needs. Usually creative thinking can find a way to at least minimize the conflict of needs. And if seen as a simple matter of diversity of need, it doesn’t have to label anyone as defective.

It sucks that even books that are SUPPOSED to be supportive for us- sometimes do the opposite…Or shows. I watched Talking Back to Autism ( even the title rubbed me wrong!) because my hubby was watching…and half way through I made him shut it off. I was so livid. I understood the intents behind it and I admired that longing to understand. But half the professionals on the show stated wrong statistics and all the parents said they wanted the child to be healed/ “Cured”…or they were huge proponents of ABA therapy which I have a problem with in most cases. (Check out a friends post on it here:http://thequeeraspie.blogspot.ca/2013/07/why-aba-therapy-unsettles-me.html)
For instance- they sited that 80 % of parents with autistics split up. I have heard that over and over…like the Autistics are the cause. Yet just in the most recent issue of Psychology Today there’s an article that disputes that stat. It only came from two studies. The marriages that were strong before autism got stronger, the marriages that were weak got weaker. They said that is normal in any situation and follows the “normal” divorce rate. So it was annoying hearing professionals cite things that were proven wrong. Then they mentioned that girls are way less on the spectrum… They’ve disproved that too. It’s just that we are misdiagnosed. It sucks because it was made with such good intents and its educating people but in a way that furthers the ignorance and stigma!
The parents were crying for a cure. Which I understand in some situations – it can be hard to watch our children struggle, but in most, the benefits render the downsides neutral. This was a good post on that too:http://thequeeraspie.blogspot.ca/2013/07/for-love-of-children.html
There are some Aspie books written by professionals that I throw across the room. I prefer the ones written by people who actually have it. Society mentalities will not change until professional feelings change. Sigh.
Anyway, I am ranting but I allow my kids to stim and if the grandparents tell them to stop tapping their feet and that they are rude to do so, I usually glare or tell ask them why that is so. I ask “Is the child paying attention to you still?” “Does the child still seem wonderful and well behaved? Kicking the table is their way of being present. If they must, they can find another way, but then maybe you could find another way to be less of a bother to them like lowering your voice and speaking in soothing tones.” I want them to see their double standard. If they call my child on behaviour that is “socially unacceptable” or “insulting” then they should not find it rude if we call them on behaviours….But I would rather everyone was just tolerant and patient. We put up with a lot of stimuli. WHy cant they?
Sorry for my rant:)

Thank you for your rant. I grew up in a world where an extraordinary amount of effort trying to make me anything bit me. Not only did it not work, it made me angry and ashamed when I would otherwise be happy and attentive.

My daughter has ADHD, and although her fidgets are attacked by school teachers and her grandparents, they are not by me. I figure they work the same way as my stimming: helpful/comforting to the person doing it. Good for you for standing for your child’s right to be them!

Rant away. This is a frustrating subject. There are a lot of horrible books about autism by professionals who work with autistic people. More often than not, I end up ranting to my husband about the latest book I’ve found at the library.

That marriage statistic is thrown around with such abandon. Do you have the article that pointed to the original studies that it comes from? I kind of thought it had been made up out of thin air, honestly. I know a bunch of parents of autistic kids and the number who are divorced is nowhere near 80%. I’d put it at much closer to the typical divorce rate.

Thank you for sharing. My sensational kid really hates the sound of my Dad’s voice. “A soothing tone.” and quiet. He has some serious hearing loss so he is louder sometimes. But then again, when my girl is wound up she has a hard time controlling the volume of her speaking voice. I swear every person in the store can hear anything she says but she has no awareness of it until I say something. Being a sensational empathic, it makes sense that I would give birth to one. She hates it if I yell but her own loudness doesn’t bother her. Fascinating stuff.

I actually like Jed Baker better than most social skills professionals, but even he still gets some things wrong.

One professional I really can’t stand is Michelle Garcia Winner. I bought her book “Socially Curious and Curiously Social” out of complete curiosity about her philosophy. It REEKED of oddity-shaming by considering all “unexpected behaviors” something we did not want to do, because they caused others to have “weird thoughts” about us. Even worse, I could not believe how many parents were giving it positive reviews. It was probably because the author is so skillful at brainwashing young aspies into believing that they are substandard to NTs, so they are somehow obligated to conform to all the silly social rules no matter how illogical they appear. Ugh!

I don’t recognize any of those titles by Michelle Garcia Winner. One book I picked up recently that had a lot of similar ideas to what you describe was “The Apserkids Secret Book of Social Rules”. One of themes seemed to be “you’re weird – here’s how to hide it”. It actually tells kids to never ever under any circumstances tell an adult that they’re wrong because adults won’t like it. That kind of advice is downright scary.

I think I was expecting today’s kids to have professionals that were better equipped to help them navigate life…it’s sad that there hasn’t been more advancement. I suppose that I should be content that recognition and acceptance are more commonplace, but I’m not.

Seriously, every time I read your posts my first thoughts are “YES. THIS.”

I tiptoe, and growing up, the adults around me were a constant stream “stop that, it’s embarassing” whilst the other kids at school were just really horrible to me about it. The whole time, I knew full well who it was “embarassing” to, and it certainly wasn’t me. I found the whole frenzy surrounding my tiptoes really bizarre – in those days I had anger issues, fairly frequent meltdowns, couldn’t do group work without an argument, and STILL, all anybody cared about was MY FEET.

These days, I’m sort of proud of the whole tiptoe thing, for some reason. At uni, it’s like nobody’s even noticed, which I’ve found really odd. I mean, they probably HAVE noticed, but they’re never mentioned it. I brought this up with Mum a while back, and her response was “Yeah, but they’re just too polite to say anything about it.” So apparently, when people here AREN’T polite about it, that’s my fault.

Worst of all is when family and family friends say (of any stimming) “It’s okay around us, we’re used to you, but you need to learn to stop that for other people to like you” – even though other people don’t mind it and DON’T BRING IT UP EVERY TEN SECONDS. Oh, and jumping/screaming at a sudden loud noise and being told off for that even if half the room jumped.

A lot of the stigma around stimming and other unusual movement habits really does seem to arise from secondhand embarrassment. And if people are too polite to say something, well isn’t that how social interaction works? We don’t go around commenting on people’s weight or age or disability or other obvious physical attributes because that would be impolite. We’re told that from the time we learn to talk. So why shouldn’t other people be just as polite and STFU about our physical differences. Gah.

I wouldn’t comment on its annoyance, I’d comment on the potential damage you are causing by only walking on tip toes. It can cause a whole host of joint related issues further down the line. There are even shoe inserts to correct the walking style to reduce the damage it does to the body. So whilst it’s not “socially inappropriate” it might be worth keeping an eye out for joint issues so you can preemptively deal with any problems which might arise.

Great post! I love your blog so much. It irritates me to no end when caregivers try to make autistic people stop stimming. The whole “quiet hands” thing really enrages me. Honestly? It seems a bit like abuse. Being forced/told to stop stimming is like having a coping mechanism stolen from you. It’s a horrible thing. I’ve never been embarrassed by any of my stims, but I’ve been shamed into suppressing various ones because other people have made a big deal about it. It sucks. Totally unfair. Now I feel very self-conscious about my stims not because I fear that other people are looking at me, but I fear that other people will get mad at me for the fact that other people are looking at me. It’s messed up. The whole socially appropriate thing just really annoys the heck out of me. Like you said, who determines what is and isn’t socially appropriate? The privileged majority? Yay, let’s just oppress the oppressed people even more! >_< *sigh* It's frustrating, but all I can do is hope that the more that Autistic people speak out, the more allistic people will start listening (and changing).

Thank you! This is such a great point: “Now I feel very self-conscious about my stims not because I fear that other people are looking at me, but I fear that other people will get mad at me for the fact that other people are looking at me.”

I don’t think parents and educators understand the type of damage they’re doing. They seem to intend to make autistic kids more “socially accepted” but are simply kicking them repeatedly in the self-esteem, which does lasting damage. I hope that even a few of the people who think this kind of thing is helpful read all of the comments here by autistic adults about what the long-term consequences are.

Amen. Preach it. I totally agree with you. I’ve said it and written it time and time again: It seems that many parents, therapists (ABA therapy!), and educators have the same goal–make the autistic kids as “normal” as possible. This is a horrible goal. And this goal is devastating and a complete denial and rejection of the personhood of an autistic child. It angers me.

Yes! It’s also a pointless goal because no matter how far underground you manage to drive autistic traits they still exist and are going to come out, potentially in very harmful ways (like self-harm and intense meltdowns).

Great point of view thank you. These days I pick my thumb constantly with the fingers on the same hand. I do it 24/7 and if someone comments on it, I have to sit on my own hands to stop but as soon as I stop thinking about stopping..they start again and I am blissfully unaware. When I am anxious, ie. a trip into town, both hands thumb pick and I lip bite. I try to stop when I realise I am doing it but then I notice things like sirens and too close people and freak out. I have always had a stim (I got sent to a psychologist at about 6 for lip licking…didn’t enter anyone’s mind at the time that I may have ASD) When my children lived at home, before my diagnosis they moaned incessantly that these weird things I did over and over, drove them crazy. Now they are grown-up and now we all know about ASD they are more tolerant…other people unfortunately are not!! (phew that took a lot of spelling corrections and sorry if grammar is off the wall…I’m never quire sure where to put comma’s so sometimes I get a bit carried away with them lol)

Some stims are so intensely driven and deep rooted. I have a few that have been with me since childhood and would be impossible to get rid of. What you say about stims that you find yourself doing unconsciously is something I can really relate to. And yes, if I’m in a place or situation where I need to pass, I’ll sit on my hands or shove them in my pockets or grip something really tightly to keep them still. None of which looks very natural, I’m sure.

A-freakin’-men, Cynthia!
“Where does the line between socially appropriate and socially inappropriate lie? Who decides?”
Yes, way too much of “social skills” training is still focused on simply teaching autistic kids to not look autistic instead of teaching the rest of the world to get the fuck over it and move on.

Now I want to get out my quill and design that. Something like “My stimming doesn’t embarass me, your reaction to it embarasses you!” in fine calligraphy, and then the “Get the fuck over it” on the back.

I grew up in a comunist country, where any small extravaganza was considered “bad”. People were educated to judge you in this way. My whole childhood I heard my mother ( she had Huntington disease) telling me: be like everybody else, do like normal people do, don’t make me ashamed! It was the same atmosphere in school. Being different was a curse. So, I had to survive mimiking a personality I had not: stay straiton the table, with your legs under the chair, don’t rock on the chair, don’t read before bed, don’t eat the same food every day, don’t ride the bike so much, don’t memorize so many poems, don’t listen so much clasical music, don’t stroke your eyebrow over and over, don’t, don’t, don’t…….you make me ashame in front of everybody. I supressed my stims for so long, and so much that now I try to remember them and it’s very hard. Your web page is so helpful, because with every post I remember myself. For ex yesterday I had an argue with my husband about doing something. I said NO, I am not gonna do this and don’t tell me what I should feel now! I said this without feeling embarased, and the Earth is still spinning. Goood!

Would you be surprised if I told you that lots of autistic kids here in the US face the exact same sort of childhood? I think shame and shaming are a pretty universal concept, unfortunately.

I’ve been slowly getting my flap back. I don’t know when it disappeared, but I suddenly remembered it a while back (in a dream, of all things) and I’m letting it reemerge. I hope that you remember some of your childhood stims at some point. It’s a very joyful experience.

Yes, yes, and YES!!!!! I recently read an internet “article” by an autism “expert” that said the same thing: “you can’t allow all stimming because …. well, it’s not socially appropriate. There’s a middle ground.” And I wanted to say socially appropriate by whose standards? Whose middle ground? And do you think it’s just goes away magically? Perfect post.

Also: By using up energy to remember to greet you as you enter the room, sitting through small talk, etc, I`m already at that “expert’s” middle ground. What xe wants isn’t middle ground, it’s to treat the middle ground as if it’s my side and say, “Hey, 75/25 is a fair compromise, right?”

Screw that noise. I know that pattern. I meet you 75, you ask why I can’t meet 87.5 and shame me until I give in and try for 87.5. Repeat until you have all of what you want and I’m miserable or I have a breakdown and have to stop, whichever comes first. Story of my schooling. Been there, done that, how ’bout no.

Um, in case it’s not obvious (I haven’t had morning coffee and forgot to go through the “what implications might this wording have?” flow chart before I posted), that last paragraph is general-you, not you-in-particular.

Maybe if we all just go out and stim to our heart’s content, it will eventually be socially appropriate. In the mean time, look at all the awesome people here who just don’t care about being socially appropriate. 🙂 Yay!

I’m repeating what others have said, but this is a very interesting perspective. I never thought of stimming this way. (But then, I only learned what it is within the past couple years.)

It reminds me of an incident that happened to me in fourth grade: everyone in the class had to tell a story, while sitting in a chair. A girl commented it was a good story except she thought my rocking back and forth was integral to the story — apparently, it had somewhat ominous undertones, more appropriate if I were telling a ghost story and at the end lunged from my chair!

Having said that, I completely agree with your point. I think it ultimately comes down to societal knowledge and acceptance. the public has learned, in a variety of contexts, that deaf people sign, blind people use a service animal, and people with mobility conditions use a wheelchair. But too many people have not yet learned what is “typical” behavior for people with Asperger’s. Over time, I think it will become more known and understood, and therefore, accepted.

“But too many people have not yet learned what is “typical” behavior for people with Asperger’s. Over time, I think it will become more known and understood, and therefore, accepted.”

Yes! I absolutely think this is the case and I think we (as adults who can choose how to ‘behave’ in public) have the ability to facilitate this change, both by speaking out/educating people and by being our autistic selves.

My son stims verbally and by shaking a toy very vigorously almost nonstop, especially at home. I have never looked at it from this perspective. Thak you for your insight. I loved reading this so very much!

I think that what you are saying is true in some respect, but leading a successful life does require some controlling of the behaviors that are defined as stemming. For many children, while they are engaged in the stimming behavior are unable to focus on the rest of the world. For the child who is flapping his hands in public, he is unable to completely observe and learn from his environment.

I think you may have some things mixed up. What often happens is that when a lot of things are going on at the same time, like loud noises, bright lights, or other sensory overstimulation, any child starts having trouble focusing on one single thing. The autistic child responds to the overstimulation by starting to stim. The lack of focus comes first. It’s not a result of the stimming. Stimming is usually a means to bring the world BACK into focus, both for autistic children and autistic adults.

Yes, after I posted this I realised I shouldn’t have said “usually”, because there’s a lot of mix up between AD(H)D and ASD already without muddying the waters further. Sometimes stimming is a means to bring the world back into focus. Sometimes it’s self-soothing because the rest of the world is so overwhelming and harsh. And sometimes stimming just is.

But what it ISN’T, is me preferring to work on my flap instead of paying attention to you.

Yeah. For me, I do focus on my stim a bit… mainly because it helps me ground myself. I can’t really think of a good analogy for it that an NT person would grok. I guess, maybe when you feel dizzy from a stomach flu, how having your hand on a wall helps you orient which way is up, same is true when I’m feeling overstimulated, rubbing my face with my hands or biting my lip or pinching my finger helps me orient which stuff to pay attention to.

I should have emphasised the word “prefer”. Somehow people seem to respond to our stims as if we’re doing it purely to annoy and upset them. As if we’re saying “anything is better than listening to you drone on”. That’s why we so often get the “don’t do that, it’s rude” comment. Leaving us questioning our every action because we never know what might suddenly be perceived as rude. There’s no logic to rudeness!

Basically, what we get taught from an early age is “don’t be natural or relaxed or happy, it’s rude”.

Changing this attitude won’t fix other problems that autistic people struggle with, but it would at least alleviate a boatload of anxiety.

Basically, what we get taught from an early age is “don’t be natural or relaxed or happy, it’s rude”.

Yep, in a nutshell. I also got weird/embarrassing/strange in addition to rude.

I basically gave up on not being accidentally rude in meatspace around 17/18, when I went to uni – body language and etiquette became an obsession of mine for a little while in high school because I was completely sick and tired of having no idea what was going on socially around me. I was socially aware enough by fourteen to realize that I pissed people off and hurt people at a huge rate compared to my age-peers, and that everyone else but me seemed to have the “social rules” manual hardwired in their brains. Being a scholarly kid, I figured study could substitute for natural inclination. The conclusions I drew from that period of time was yes, study can substitute for natural talent, to a certain degree, but at great mental cost. I started to doubt whether it was worth it during the summer before I started uni, at 17, and then somewhere around the start of winter term, at 18, after I’d found a niche among tabletop gamers and anime nerds during first year of uni, none of whom would make fun of me if I stimmed and all of whom would ask rather than jump to worst-possible-conclusion if I said something that didn’t make a lot of sense or could come off out-of-character and hurtful, I decided that unless the reward is worth the price, I wouldn’t bother (and very rarely is reward worth the price).

But I really think you need to have found your niche before you’re able to do that if it doesn’t get to complete burnout I-don’t-have-a-choice-I-literally-can’t-do-this-anymore stage, which I’m not talking about right now. I’m talking when you have enough mental resources that you could choose to allot some to passing and instead choose not to. Burnout is a whole different beast. Been there, done that, not fun.

If you don’t have your niche, you don’t have the emotional support that goes hand-in-hand with acceptance and respect. Case in point: I literally spent most of my first year of uni exclaiming how nice everyone in my new niche was – they were all bewildered because they just treated me like everyone else. But, that was it, they treated me like a fellow human being rather than some particularly disgusting-looking bug they found in their soup. That was amazingly supportive to me and did a lot to build my self-esteem. Other people thought I was interesting! And fun to be around! And could give good conversation! And weird wasn’t a bad thing to them! Wow! And, on the other side of the acceptance and respect coin, you kind of need the people who will accommodate you by, say, asking what you mean when you say a shirt makes someone’s belly look flat instead of assuming you’re calling them fat (that particular faux pas caused my only friend in high school to not talk to me for a month). You almost need to find folks with the attitude of, “I accept you and the fact that social implications are hard for you, and I respect you enough to assume you wouldn’t want to attack something I’m very insecure about. Therefore I’ll ask for clarification unless you’re making it obvious that you mean this mean thing you just said.”

Not that I mean my friends aren’t allowed to be hurt when I do an implication fail. They are. Just that most of gaming group know how to tell when I mean it and when I don’t, so if they think I don’t, they go, “What?” and I know that means time for me to explain what I mean in different words, and then they explain what they thought I’d meant initially because implication and I apologize for the hurt and make a mental note that this phrasing -> that implication and try to keep it in mind (case in point: if a shirt is flattering, say it’s flattering, not that it makes a person’s belly look flat because the latter phrasing implies the person’s belly is not flat and therefore that they’re fat, which is a heavily-stigmatized build in our society. Oh, I get it now). But I’m not required to spend a shitload of mental resources examining and re-examining and re-re-re-examining everything I want to say to make sure it won’t be misinterpreted before I say it (by which time the conversation has usually moved on – requiring me to pass in conversation effectively silences me unless it’s online).

I have a 13 yr old girl and 10 yr old boy who can live by this advice. I was also that 13 yr old geek girl as well. In my day they called it shy and weird. In her day they call it autism. We found it is actually a gene that functions differently. I have it and so when I saw my daughter and son I know immediately. I want them more to find their niche and be comfortable. There is some accomdation they will have to make to the world and then find a place where they do not. Middle should be middle not surpress everything because people dislike it.

I have lived this my entire life though I learned to be socially acceptable(mostly stim) like nail biting. I didn”t stim much. I can pass NT when I need. I agree it is exhausting otherwise to bother. My husband good guy still sometimes has trouble realizing if I have droned on too long it is ok to tell me to stop rather than get annoyed. Te rude snide tone of annoyance bothers me far more than simply saying stop please. He has been taught to not interrupt.. Hard to stop something you are unaware of.

I learned to pull NT in and out as needed though at times I fail spectactularly. Finding your niche and explaining to those close is the best solution I have found. If they understand they tend to overlook or know it is ok to say when they are bothered and that I will not take offense unless they are rude.

Trying to explain this to NT people like a researcher I know well and respect the closest I have come is saying I want you to explain what red is to someone who is colorblind in words. Good luck with that.

I stim pretty much all day long and I lead what I think most people would consider a successful life. I don’t see the two as being mutually exclusive or even very much related other than the fact that stimming sometimes helps me think more clearly or stay focused on my work.

Unless you’ve actually been an autistic child, I think it’s overreaching to speculate so conclusively on how flapping impacts a chid’s capacity for concentration or learning. I also think that Ine really summed it up well when she said that the distraction comes from sensory overload and stimming is the response.

I’ve noticed that people who are pro-forced-normalization tend to spell “stimming” with an e. It’s a useful tell.

Also, I’m someone who works in industry at the moment and will be doing a PhD in Chem Eng next year. I refuse to suppress my stims, and I’d say I’m fairly successful by conventional standards. On the contrary to what you say, I credit my stims for enabling me to focus and retain enough executive function to be “successful.”

And that’s leaving aside the issue of whether or not success can be – or should be – measured by someone other than the person in question.

The idea of rocking in private is really funny to me. I get stressed around people, so if I was in public and wanted to stim, if I were to go to a private place with no one else there I would probably not need to rock any more! Also, generally I’m in public if I want to be in public, so if stimming is necessary in order to be in public then that’s what’s going to happen. I’m sure as hell not leaving.

So true! A couple of months ago I was in a very stressful situation that I didn’t want to leave but was having trouble deescalating my anxiety over, so I just started rocking back and forth a bit in my chair. There were a dozen people in the room and not only did no one seem to care, they didn’t even seem to be paying any attention to what I was doing. And you’re completely right, if I left and went somewhere private the urge to stim would have just evaporated and I would have been removing myself from a situation that I really did want to be a part of, even though it was difficult for me.

For reasons that have never really made sense to me, some physical actions are considered a normal form of stimming while others attract negative attention. Flapping and rocking are definite no nos in the United States.. Nail biting: not great, but ok. Pacing: when limited to certain times and places, considered a normal way to represent anxiety. You read all the time in novels about worried family members pacing in the waiting room as their loved one goes through surgery. So far as I know, there is no reason for these preferences, so I assume it’s cultural — and cultural norms are incredibly powerful.

i think that accepting the stimming completely can leave many children relying on the stimming to cope in society. i agree that a person should not be looked down at for doing such behaviors, but if stimming is used to cope with outside stresses then alternate behaviors and strategies should be taught to deal with the issues.

I don’t see why stimming is a fundamentally unacceptable coping mechanism. Certainly I’m all for adaptations that make a person’s (and please keep in mind that there are autistic adults too) environment less stressful or that facilitate better coping, but I fail to see why stimming shouldn’t be one of the tools in an autistic person’s coping toolbox.

You stim, too, SFM. If you’ve ever bit your nails when you’re nervous or paced when agitated or felt restless when waiting on something you’re scared about, you’ve stimmed. If you know other NTs who do those sorts of things, they stim.

Why, if I pace when agitated, that’s okay, but if I hold my knuckle between my teeth for the same reason, that’s not okay? Why, if I bite my nails nervously, that’s okay, but if I twirl my hair or jiggle my leg, not okay?

What I’m driving at is that the urge to correct stimming doesn’t come from wanting the person who stims to have effective coping strategies. They already do with their stimming. It comes from wanting to suppress the different and enforce conformity.

i think that accepting the singing completely can leave many children relying on the singing to cope in society. i agree that a person should not be looked down at for doing such behaviors, but if singing is used to cope with outside stresses then alternate behaviors and strategies should be taught to deal with the issues.

Well, I used to cry a lot in almost every single situation just to cope with it-it’s not stimming, exactly, but it was a defense mechanism that used to work for me until I realized there were other ways to cope.

I don’t think stimming is a defense mechanism though. I think it does actually help the stimmer to focus, release any negative energy, and retain information. My form of stimming is primarily verbal (ie., having a conversation with myself), which doesn’t seem to be “socially acceptable” anywhere, especially if it’s done very loudly for minutes, even hours, on end (whispering seems to be ok, but it doesn’t work as well for me). I remember that I shut it down for the longest time, and during that time, my grades in school were okay and not the greatest. But any time I passed a course with flying colors was because I let myself talk through the review material out loud whenever I could.

I mean, I’d love to find alternatives for that (I know for sure that this kind of stimming would make people who don’t know me well very uncomfortable), and I’ve tried other alternatives, but the verbal stimming is what works for me!

It was stimming, then (rocking on a bench in a town centre), that caused the police to manhandle me to the ground, sit on me, handcuff me, and submit me to indignities of no self-determination, prolonged (and painful) restraint, and forced medical and psychiatric investigations, all allied to the threat of (legal) 72 hour detention without charge or arrest, or legal representation.

Thank you so much for your important words. My youngest son was recently diagnosed ASD and his stimming behaviors have often left us feeling like we need to “explain” to others what he is doing in order to avoid judgment and assumptions that something must be “wrong” with him. We accept and love him as is, and we expect others to do the same. I look forward to a day when conversations like this are no longer necessary and that will happen because of people such as yourself who open honest dialogue and bring awareness and understanding.

Thank you! I do think that day will come. Speaking out is important and being our autistic selves is important and just as important are awesome parents like you. This message is so critical: “We accept and love him as is, and we expect others to do the same.” If anyone needs any more explanation about your son than that, they’re clearly the one who has something wrong with them.

This has sent me on a train of thought that I find interesting, so on the assumption that I can’t be the only one on the whole entire internet, I’ll share it.

I find differences between things taught to children and things taught to adults (by both autistic and NT people) to be very telling. Children are told not to do things much much more than adults are told not to do things. If someone didn’t understand stimming, they would be much more likely to “teach” a child that anything they might do was inappropriate, as opposed to an adult.

Thus, when I consider what it is or is not acceptable to “teach” a child, autistic or otherwise, about stimming or something else, I think about what I would say to that child if they were around my age or older.

I mention this because there seems to be an assumption in some comments that stimming is a childhood activity and that an autistic person cannot hold the stance that socially inappropriate stimming is a thing (as opposed to socially inappropriate behaviour that is unacceptable across the board, eg: masturbating).

I was with you right up until the last part and now I’m wondering if I’m misunderstanding you. 🙂 I think I agree with everything you say in the first two paragraphs, if I’m reading them as you intended.

And the assumption that stimming is exclusively a childhood activity is one that suggests to me a certain level of ignorance about autism on the part of the assumer. Totally with you there too (I think).

About the last part, I’m of the belief that an autistic person can hold whatever stance they like on the appropriateness or inappropriateness of stimming. The key word in that sentence is “autistic” because I think it’s different to have an opinion about your own physicality than it is for someone else to have that same opinion. For example, if an autistic person says to me, “I think it’s inappropriate for me to flap in public” I’m not going to argue with them. That’s certainly a valid way to feel and many people do feel that way. But if they say, “I think it’s inappropriate for you to flap in public” that’s another story.

I’m not sure how to say the last part of my comment differently. It was mainly SFM that I’m thinking of, or, not them directly exactly. ischemgeek wrote a post that was sort of NT-vs-autistic stimming, and it made me wonder whether ischemgeek was assuming that SFM was NT (I still don’t know, which is fine and not really relevant). I can imagine an autistic person saying “i think that accepting the stimming completely can leave many children relying on the stimming to cope in society”, even though I have never said it and have never heard anyone other than SFM say it.

It’s only very vaguely connected, but it was part of my train of thought so I put it in! A bit tangential though, and entirely ignorable.

However, I can certainly see how my phrasing would’ve come off as me assuming the other person is not autistic. I apologize for making that implication and any hurt the implication causes. I certainly get that some autistic people don’t feel that stimming is appropriate, and I get that it would be a false dichotomy and thus erasure of those autistic people to try to imply otherwise. Sorry about that.

That’s okay; I think everything can be misread, and we can’t make anything we say completely 100% misreading-proof. It’s not that I misread it, I didn’t *think* you assumed that SFM was NT, it was just a little ambiguous and rather than working out which one you meant or asking which one you meant, I wandered off on a braintangent about ageism and whether it’s okay to police other people’s stims at all, whatever our autism/NT status! Having said that, your comment makes more sense now you’ve clarified, so I am grateful. 🙂

Ah how cool, this post has me thinking about stims and if some of the things I do qualify as such, because I never thought of most of them that way – just thought I was hyper. I think I may have stumbled across some “socially appropriate” stims inadvertently, because no one seems to mind when I:

– skip down the hall at work
– bounce up and down and hum to myself while I am eating
– play air piano on the desk
– soft-shoe tapdance when forced to stand in one place
– sing EVERYTHING that I hear other people say, right back to them (“Can you hold this for me?” <– They ask. "Cannnn you holddddd this for meeeee?" <– I sing back, while happily doing what they asked)
– bob & rock incessantly to the music in my head, usually a repetitive tune from a commercial or tv show
– twirl my hair, and twirl it, and twirl it…
– exclaim in delight whenever I see something with an interesting-looking texture and then have to go and touch it even if it is someone's hair or their clothing.
– jazz hands (a more on-purpose-looking, and shorter version of hand-flapping, that, when accompanied with a purposely silly face, gets me smiles instead of stares. Whatever works; still gives me relief and people think I'm just being funny!)

I am rarely rebuked for doing these things (or maybe I just don't notice people's reactions?). I seem to have eliminated all the socially "inappropriate" stims (that got me bad reactions from other people) when I was younger. Now I wonder if I regret that?

Thanks Ine 🙂 Are there no stims you can do in public? Maybe at first people might think you are odd, but after a while, if they are used to you and you can laugh it off and smile about it, they will get used to it and even enjoy seeing you do it. Sometimes I try to get people to do things with me – I tell people to run their fingers along fences, or make them spin in circles. I feel like NT or Aspie, there are “stims” that we all engaged in as small children, and that trying these behaviors out, helps people in and out of the spectrum revisit childhood and get in touch with the simple sensory pleasures they have neglected in order to appear “grown up.” We are not so different 🙂

I’m not sure if you have a bunch of socially appropriate stims or you have a really accommodating bunch of people around you. 🙂 Either way, that’s awesome. You sound like a fun person to be around.

I have such a strong urge to repeat things people say, especially distorting and transforming the words. I confine actually doing it to home though, often babbling variations of words to the dog, who finds it entertaining.

Thank you Cynthia – you seem pretty awesome yourself, from your blog posts! 🙂 I think it helps that I am an artist/performer. People expect me to be somewhat odd. But when I used to work in corporate America I sometimes did have problems. Now I always tell really silly jokes and let my quirkiness come out during interviews so that it’s clear to any prospective employers they are hiring a very unusual person. As I commented in your great post about infodumping, I just have to learn to be myself in social situations as well. (Trying!)

Haha I can imagine you entertaining your dog with twisty words 🙂 I want to hear your word transformations!! Do you have favorite word sounds or syllables? Words with “eee” in them are my faves.

Aw, thanks. 🙂 I think that being a performer probably does give you a lot more leeway in what people expect of your “persona.”

I don’t think I have favorite sounds necessarily. I like to take a word and change the stresses in it or pronounce one syllable differently, cylcing through all different possibilities, or keep one syllable but change the others. I have no idea why a word catches my attention but now I’m going to start paying attention to see if I can find a pattern. I see a post about echolalia in the near future.

OK, I just came across an article that explains why chewing gum is good for you, because it reduces muscular tension, alleviates stress, adds alertness, and improves focus. It’s really badly written and doesn’t link to any actual research, but for those of you who are interested, here’s the link: http://www.brainleadersandlearners.com/ellen-weber/chew-away-stress/

I just think it’s funny because chewing gum is done by everyone and yet children are told it’s “not polite”. (Well, I was told that as a child. Not sure if that’s still the case). Socially inappropriate or appropriate? Yet chewing gum doesn’t seem to be met with the same amount of disapproval and even horror that most stims get.

I don’t think it’s very far-fetched to see both stims and chewing gum serve the exact same function, though.

This makes totally sense to me! I’ve been lucky enough to have overnight support some nights lately. When I’m sleeping, if I’m dreaming a dream that’s sensorily overwhelming (sometimes inspired by lots of noise coming through the window), I grind my teeth and my friend wakes me. It gets bad enough that if I’m not woken up I do it for ages and then have killer headaches the next day! This means that chewing is the stim I do while asleep.

Okay, that’s really interesting because my husband insists that chewing gum makes him more alert and focused. I always sort of dismissed it but I guess he’s right.

Lots of people stim by chewing on things. There’s a whole line of chewy jewelry and stim toys for people who have chewing stims. Chewing gum doesn’t seem that far removed from other chewing stims, though it’s definitely the most socially accepted by far. Maybe chewing on a pen is also socially pretty okay?

I hate wooden pencils (they feel weird and I hate the imprecision of their leads because it makes my already-bad handwriting look even worse, so I use mechanical pencils only), but when I was a kid in school I would get a few just to chew on. My experience: Acceptable up until about grade six, when the teachers start to chide you privately about germs and after grade 8, they’ll humiliate you in class over it by yelling out how disgusting chewing on a pencil is. I adopted chewing gum and toothpicks as alternatives. Not as satisfying as a pencil (I don’t know why I like chewing on pencil so much, just that I do), but they don’t get people yelling at you about being disgusting)

I always found the metal holding the eraser nice to chew on. Soft enough to give without the annoying paint flakes the wood gave off. By high school it was mostly cheap pens, though–I also vastly prefer mechanical pencils for writing, particularly the .5mm ones.

Oh man, biting into a nice soft pencil with my back teeth was a secret pleasure as a kid. All of my pencils were covered in teeth marks. Just thinking about it makes me want to go do it. This is like a true confessions thread. 😀

I’m not sure that chewing gum puts one at risk for TMJ problems, but I do know that if a person already has TMJ problems, gum chewing can exacerbate it. I stopped chewing gum several years ago because it was adding to jaw pain (there is something wrong with my jaw structurally and I clench my jaw at night). And I love chewy candy like salt water taffy, but I really have to limit how much I can eat at one time simply because my jaw will start hurting. I have had my lip pierced since early 2009, and I find myself biting on the stud quite a bit (something my mom is constantly calling me out on so that I’ll stop).

From a parental viewpoint… my problem with some of the stimming that my daughter used to do was not that it embarrased me but that it could make her an easy target for some of the evil people & bullies out there. A person in a wheelchair etc. is probably more socially aware of the people to steer clear of, not as naive & easily led as she was.

Sharon, that’s a victim-blaming attitude you’re instilling in your daughter. The answer to bullying isn’t to pressure a kid into being something they’re not (i.e., further their shame and teach them the way they are is wrong), but to address bullying strongly though the school and emphasize to her that nobody deserves to be bullied.

Speaking from experience, being taught by my parents “Do ____ to fit in better,” and “Don’t do ___ because kids will make fun of you for it,” taught me not to go to them when I was being bullied, because I fully expected yet another lecture on how to fit in, which taught me that it was my fault I was being bullied, and in turn shamed me for something I can’t change – and even if I could, I wouldn’t.

Would you tell someone who uses a wheelchair not to use their wheelchair because other kids might make fun of them for it? That they should just work really hard at learning how to walk instead? That’s exactly the sort of attitude you’re teaching your daughter when you tell her not to stim because people will make fun of it.

Speaking from experience of being a girl in your daughter’s position, that attitude from adults is more hurtful and more damaging than the bullying itself. I could’ve coped with the bullying. What I couldn’t cope with was having adults I respected effectively telling me that I deserved it and brought it on myself for not trying harder at passing for normal. That shame and hurt led directly to my burnout and depression in high school, and long before I hit that point, it led to me engaging in self-injury and risk-taking to cope.

I don’t say this to attack you, but because I was that girl when I was a kid. Don’t do to your daughter what my parents and teachers did to me, I beg you.

Thank you for saying this, ischemgeek. I can see where you’re coming from, Sharon; you’re worried about your daughter, and taking on the whole world seems much harder than teaching your daughter how to fit in. But I’ve been in that situation too, and I am having to relearn how to stim “obviously” in order to avoid harmful, wounding, socially acceptable hidden stims. It heals my heart to read things like what you have said, ischemgeek.

I get where she’s coming from, but for me, it was so toxic and so harmful and basically compounded bullying on top of bullying. A lot of the “advice” my parents gave me amounted to, “You are a strange child, and being strange is wrong. Everything about you – how you move, how you talk, your likes and dislikes, your interests and passions – is strange, and therefore wrong. Bullying is the consequences of being strange, and if you don’t want to be bullied, don’t be strange.”

You can’t change your core being. You can act like something different for a while, but the price you pay to do that is far, far too high. I have scars to prove it – both physical and mental.

Acceptance is the answer to bullying, not further ostracism and victim-blaming.

So, yeah, um, I get what you’re saying, is what I meant by that. Also, I’m a bit upset because her comment unintentionally triggered some internalized scripts to start sounding from my parents, so I’m probably going to stop reading comments on this post until I’m in a better brainspace because I can’t think on this stuff with my parents yelling at me to not be weird/strange/annoying/loud/hyper/know-it-all/me in my head because “we don’t want you to get teased, sweetheart” and “this is why the kids make fun of you” and “people will tease you.”

Point taken but I didn’t say I stopped her from doing anything. She stopped all her stimming herself as she learnt other ways to self-regulate. That said if her or my other children sat there picking their nose on the bus or train I, like most parents, would tell them that was socially inappropriate, just as I would tell them not to eat like a pig at home or in public – generally backed up with they were making me feel ill. I may even model some behaviours to get their emotional reaction so they would make their own decisions as to what they personally found acceptable to do themselves. I’m sorry if my comment upset you that was never my intention.

I think it’s also because we still see autism as something to be fixed. Nobody would think of telling a ginger-haired kid to dye their hair to stop getting bullied and fit in, even though that’s an easy fix.

I learned how to suppress nearly all of my stims to the point where I can hardly even remember doing them. On the surface, I’m a very well-adjusted adult with a successful career and a decent social life. But I’m still horribly naive and don’t even see most of the time how people are taking advantage of me. Maybe if I’d been bullied for my stims, I would have learned earlier on how awful and ruthless people can be. Because I still get bullied for not fitting in, even though most of the time I need other people to point out to me that certain things are not OK. I still get called weird, even though I don’t stim. Because women who can’t multitask, have encyclopaedic knowledge, don’t do small talk, have an odd sense of humour, and are absolutely useless at body language and reading between the lines have a hard time fitting in regardless of stims. My experiences range from jokes about being “a third gender” and “let’s ask inepedia” to getting accused of duplicity and intransigence because my facial expression doesn’t match my words. I get fired a lot. A LOT. Because I’m absolutely rubbish at office politics and so naive that I think all that’s necessary is simply doing a really great job.

If you’re still afraid of your daughter being an easy target for bullying, concentrate on letting her know that whatever happens out there, she’s still loved and appreciated exactly the way she is at home. I know you want to give her tools to cope with what’s happening in the cruel world outside, but sometimes the only tool you need is love, acceptance, and a safe place to retreat to when things get too much.

Really couldn’t agree more with the third gender stuff. I have never heard this term but your description just screams at me off the page. I am a girl who doesn’t do small talk, can’t multitask if my life depended on it and who has a nerdy sense of somewhat black humour. Sure it’s fine to be considered one of the guys while goofing off with a bunch of male friends until they inevitably remark that I am actually a weird girl. Women are generally less accepting than men for my less than feminine traits but both genders are confused when I wear a skirt. Why does everything have to be so artificially equated to some outmoded gender stereotype?

My parents are still seething over the fact I will never win “miss congeniality” while expressing confusion over my love of mechanical and scientific things. I want to wake up in a world where I can be a complete version of me without be subjected to dissection over which of my behaviours/physical traits place in which gender group.

I understand where you’re coming from as a parent. No one wants their child to be bullied.

But as a kid who was bullied and physically threatened/harmed by other kids, I can tell you that I did everything I could to make myself as unnoticed and normal as possible and the bullies still targeted me. Bullies pick their targets for many reasons and one of the biggest is not that a kid is weird but that they’re vulnerable.

As you point out autistic kids are vulnerable by nature. They need help learning how to identify threats and how to deal with them. “Just don’t get noticed” isn’t really a viable long-term strategy. A better strategy is “there’s nothing wrong with you” and if anyone makes you feel uncomfortable or scared or tries to tell you that there is, here are some specific things you can do to deal with it.

There is a lot of other good advice here about dealing with bullies so I won’t repeat it. I hope this doesn’t feel like we’re ganging up on you. This is a really sensitive triggering topic for many of us because we were that kid who was told “just act normal and you won’t be bullied.” And when we were bullied anyhow, it felt like we’d failed and for many of us, the only way to cope was to hide our failure and suffer in silence. This is a pattern I’ve seen repeated too many times to think it was just me.

Oh gosh, I hope not. I’d like this to be a place where everyone can express themselves honestly and this is such a hard subject with so much deep-rooted pain. I remember how helpless I used to feel when my daughter would come home and tell me someone was picking on her for being different (he was calling her racist slurs and getting away with it because he was intellectually disabled). I totally get that as a parent. But the pain of being bullied and then having nowhere to go because it feels like it’s your fault, I get that too.

I don’t feel ganged up on – everyone is entitled to express their opinions. What I would also say is that my daughter had sound sensitivity issues & she would find it hard if my son would hum to himself or makes a particular noise that he used to do, mainly when bored. He was taught to respect that she found this hard to deal with & was asked & generally stuck to not doing when she was around.

My daughter is now 21, no longer as naive, can pick up on social clues & cues around her, has good understanding & use of non-verbal communication, she talks to me as a friend not just her Mum ( although this is still developing). Recently she was asked if she had to put a picture to autism what would it be – she stopped & thought then replied ‘sunshine’ so I don’t think we’ve done to badly.

That’s great to hear. After thinking about your comment some more, I realized that the wording implied that your daughter is grown up now. Would you mind sharing some of the strategies your daughter found helpful for self-regulation?

… Although, I did see an article another day about a child who used a walker being refused entry to a supermarket because the guard said he couldn’t bring his frame in because it had wheels!!! … apart from the blatant discrimination – um – duh! – I think most supermarket trolleys have wheels!!! … so we’d better ban them too – hey? 😉

Hmm I really agree with the sentiment of this post, that stimming is a necessary part of autistic sensory/self regulation and shouldn’t be suppressed or hidden, but I’m not sure that the concept of some forms being ‘socially inappropriate’ is necessarily entirely invalid.

I have always struggled with doing things that would definitely be socially inappropriate, repeatedly catching myself and having to stop, or having to have strategies to stop them happening, and I never understood why I couldn’t just make myself stop doing them. Working out that they were stimming (and possibly even ticcing) was a very helpful tool to help me to keep those particular habits in private, and replace them with more more socially appropriate forms of public stimming, like rocking, finger wriggling, fidgeting, leg bobbing, doodling etc.

What’s ‘socially appropriate’ depends on the situation, but generally things that would be interpreted as sexual, threatening or disgusting fall into the ‘inappropriate’ category unless everyone involved, including the audience, has consented. There are plenty of forms of stimming that disgust people, especially ones that involve smelling and licking things and putting things in the mouth, as can stimming that involves bodily fluids. Genitals tend to be sensitive body parts and so are often involved in self stimulation, without this necessarily being intended to be sexual. Stimming can also involve sometimes involve getting into other people’s personal space or staring (apparently) at people, both of which can be seen as threatening.

I think it is actually helpful to consider this sort of socially inappropriate stimming separately to general social inappropriateness, because stimming tends to happen absentmindedly and has a purpose. It isn’t something you can just forbid, you have to understand it, change the situation or provide an alternative, to redirect it rather than stop it entirely.

I don’t think it’s that unreasonable to think that the authors were likely thinking of this meaning of what’s socially appropriate.

There’s another type of ‘inappropriate’ that covers things that are extremely disruptive in some situations that have a ‘social contract’ that everyone involved will behave in certain ways (like being quiet or staying seated during work). In this case I think there’s much more of an argument for making exceptions and being tolerant (and I’m strongly against the idea of ‘quiet hands’ in the classroom, there’s no argument for that), but if a particular type of stimming like loudly scraping a chair on the floor, or leaving the table and pacing, is actually disrupting people and it’s possible to avoid being ‘antisocial’ by stimming in less disruptive ways (like, for example, rocking!) then that’s probably preferable (assuming the more socially acceptable forms actually have the same calming/focusing effect).

Ultimately, there’s really no way to tell what the authors of the book intended in their initial statement, but I have definitely seen people on autism forums using ‘socially inappropriate stimming’ to mean things like genital fondling, nose picking, licking things, sniffing other people, staring at people or particular body parts etc. In those cases, I could see myself giving the advice that they should try to channel it towards more ‘socially appropriate forms of self stimulation’ while also stressing how important stimming is and how damaging it is to arbitrarily prohibit anything that ‘looks weird’, when it doesn’t actually hurt anyone and has a positive effect on the stimmer.

So yes, I really do wish that people would specify what they actually mean (or at least give a few examples) when saying euphemistic things like ‘socially inappropriate’, and I’m not at all in favour of ‘quiet hands’ or stigmatising rocking and flapping, but I do think there is actual overlap between some types of stimming and genuine social inappropriateness of various types, and that it is useful to recognise this. And I say all this as someone who stims publicly and who also does a lot of different private stimming that would most definitely fall under ‘socially inappropriate’ by lots of people’s standards, which I do in large part to be able to keep myself more appropriate in public.

(I’ve genuinely spent hours writing and rewriting and re-rewriting this comment, and I’m still not happy with it, but I’m sending it anyway. Sorry if I’ve upset anyone. I don’t know, maybe I fall more under ticcing than I think. Maybe I should be more proudly weird in public? Maybe I’m the only one who struggles with impulse control? I’ll stop agonising and send this now. Sorry for being critical ~_~)

Socially appropriate, in my experience, is a euphemism for “You must look like everyone else all the time or else we’ll punish you and shame you until you give in.”

I mean, by all means, teach about professional attire and mannerisms (actually, a conference where making a good impression will help my career is one of the few situations where I’ll put a lot of work into not being accidentally rude as I socialize – and I usually have an NT coworker with me to kind of do most of the chit-chat while I handle technical details), and teach about rules of ettiquette, and definitely definitely teach about boundaries. I’m not talking about the stuff that harms people (some people, elsewhere, have equated, “I should be able to stim if I need to,” with “I should be able to sexually assault people with impunity” – to clarify, I’m not saying that’s what you’re saying, I’m just explicitly acknowledging that no-consequences-for-social-conduct-ever isn’t what I’m talking about here because people elsewhere on the net have straw-manned this argument to mean that), or even stuff that is legitimately disruptive (me fidgeting with a pen in my hands without hitting it on stuff is not disruptive as it makes no noise and isn’t large enough motion to catch most people’s eyes and I shouldn’t be asked to stop if I need to do that to concentrate, but by all means ask me to stop if I’m tapping said pen on the desk and it’s distracting you). I’m also not talking about stuff that could endanger the person stimming (like, I dunno, spinning on a sidewalk next to a busy road), or stuff that could damage property.

All that is stuff that is either legitimately helpful to the person in question, or legitimately not-okay socially, for reasons other than “social appropriateness.” Professional attire and mannerisms are tools that you can use to help yourself either in job interviews or other work functions, and are not mutually exclusive with stimming (I carry around a pen with a retractable ink at conferences, and I click it a few extra times as a stim whenever I have an excuse to use it, for example. Helps me calm down in overstimulating environments with too many strange people). Rules of ettiquette, likewise, are tools you can use for less formal situations. Stuff that is criminal (harmful to others or property) isn’t wrong because it’s inappropriate, it’s wrong because it hurts people, and stuff that puts the person in danger should be discouraged because getting hit by a car or something would suck. I’m not talking about any of that right now, and I’m pretty sure you and I are in complete agreement about all of it.

I’m talking about enforcing normalcy in informal situations when the person stimming is doing something that is neither harmful to people or property, nor disruptive of their activities. Rocking on a bench as I wait for my mother to come out of a store that overstimulated me should not have resulted in me getting chided and told kids will make fun of me if I do that as a kid. I wasn’t going to break the bench, I wasn’t hurting myself or others, and I wasn’t bothering anyone. I was just trying to calm down after a store that had too much bright-on-white and music so loud it hurt my ears. Fluttering my fingers at martial arts when I’m watching kids do their stuff shouldn’t get me chided for being a “bad example”. Pretty much nobody but the other instructor(s) can see it, and I’m not disturbing anyone. Jiggling my leg as I work on something at my desk shouldn’t result in someone sniping at me about whether or not I want to be there and how they could fire me if I want, especially after I’ve given an explanation that it helps me to concentrate because I have ADHD (it doesn’t at my current job, but it did at a different one – along with lots of “ADHD isn’t a real thing” ableism). Rocking lightly in class as the prof’s lecturing shouldn’t result in the prof singling me out and asking if I’m on something. Stuff like that is the stuff I’m talking about.

I’d like your take on something based on your statement, “Rocking on a bench as I wait for my mother to come out of a store that overstimulated me should not have resulted in me getting chided and told kids will make fun of me if I do that as a kid.”
Please, as a preface, I’m sure that my example will be able to have holes shot all through it, what I’d like is to have you look for any valid points it may have, and allow for its preposterous parts to stand unnoticed.

When I read that quote, the first thing that came into my head was one time When I was 18, (I was married at 19) my fiance and I were skiing. She was a buxom woman, even at a young age. We came into the lodge and the way her ski bib was on her, it really accentuated her upper half, and I’d say not so much in a flattering way. (Kind of like a ‘spinach/basil in your teeth moment, just much more pronounced). Of course I told her that she might want to cover up, or otherwise adjust her clothing. She was miffed at me. I thought I was being her “wing man” and helping her with her ‘blind spot’. What I want to know is why is that any different than a parent of an AS child being their “wing man” and helping them to know the ropes of the ‘real world’ that they live in? Can you imagine what people would think, including the AS adult child, about a parent that never tried to ‘show them the ropes’?

Let me liken it to the sidewalks that were in my neighborhood as a kid. There were oak trees that grew large and raised the sidewalks so that they could easily cause a person to trip. Sure, ideally the sidewalks (society in general) would be fixed so they would no longer trip people (that NT’s wouldn’t give AS’s a second thought), but until the sidewalks are fixed, it makes sense to be taught how to avoid tripping.

I’m sure I’ve lost everybody… that is my specialty. Sorry if what I posted made no sense to you.

I think you actually summed it up pretty well in that anything that is sexual, threatening or disgusting is socially inappropriate whether it’s stimming or not. I think that common sense rules can be applied to behavior to determine whether it’s appropriate to do in public. Ischemgeek pretty much beat me to everything else I was going to say so I won’t repeat it at length.

Also, that book did give examples and the one example was repeated several times as a type of socially inappropriate stimming that should only be done in private was . . . rocking. Which is what made me so angry in the first place.

To hell with “socially appropriate.” I am sitting on a sidewalk, quite in public, rocking back and forth, and fiddling with my necklace (when I’m not typing). Nobody cares!
Nobody actually cares about autistic people stimming if they don’t know that’s what their seeing. There is no problem whatsoever with the behaviours themselves; it’s *just* prejudice against autistic people.

“Nobody actually cares about autistic people stimming if they don’t know that’s what their seeing.”

This is a good point. A lot of things become pathologized when an autistic person does them. There was a great article by a father of a boy (autistic or ID, I can’t remember) talking about the language that people apply to his son’s behavior versus the language they would use for the same behavior if he himself did it. I wish I could remember where I saw it because it illustrates your point beautifully.

i have a beautiful 21 yr ols son w asd. stim is a behavior. i have always believed all behavior is a form of communication. i’ve always shared my views that we need to respect this need in my son. period. it makes him feel better.

Behavior is absolutely communication! A few weeks ago I wasn’t feeling well and started stimming quite obviously after dinner in a restaurant because I was in pain. My daughter and husband both immediately asked me if I needed to leave (rather than telling me stop, which was awesome). Even for verbal people, behavior is communication.

One thing I don’t get. I’m autistic. And I stim all the time, and I don’t feel there’s anything wrong with it. But the whole concept of ‘social’ is that it IS made up. Sociality is a socially constructed fiction… so it is always co-constructed by everyone and no one. It changes over time. What changes it is people who challenge it. Like you (and perhaps me) do. Self advocacy organizations like ASAN can support us, but it is up to us to change people’s thinking. What is shocking to me is people who are shocked that people are shocked when something strange or unusual to them is observed socially.

A community is basically a wall built around a group to keep other people out. Which makes communities and societies discriminating spaces. But since we live in and with them we have to change them as much as we can.

It is made up but unfortunately for us, it’s mostly made up by the majority. I think we can change people’s views in time, by speaking out and by being openly autistic in whatever way is comfortable for us (and educating people who ask or seem open to it). It’s a slow process, but every little bit helps, right?

This is a brilliant, beautiful. Your ability to “nail it” time after time in your posts is a phenomenal gift. I’ve been struggling with OCD issues. They can quickly spiral out of control. Sometimes melding the control I need to exert over compulsions is hard to reconcile with the acceptance I feel for neurological conditions. I don’t want to cure my OCD, nor my son’s, but recognizing when it is all consuming and harmful is essential. I think the difference is that stimming is benign, it soothes and involves no other person. Compulsions can injure and some tics are blatantly (though unintentionally) vulgar and offensive. I thank for giving me good things to ponder!

Thank you for sharing your feelings about your OCD. I have mild OCD symptoms, unlikely to rise to a clinically diagnosable level these days, but still something I fight to “master” at times. When they surface, I find them frightening because they do feel dangerous and dark and very different from the urge to stim.

Also, some stims can be dangerous (head banging, biting, eyepoking) when done in a certain way. I don’t want to discount that, because it’s a serious problem for some autistic individuals. But you’re right, so many stims are comforting and harmless.

Thank you very much- and Im glad to have found your blog Im your newest follower. 🙂 This post is VERY timely for me, because our sweet 3 year old daughters stimming has picked up, and as a parent I am torn between advice to help reduce, rediret, or even “extinguish” (yikes) these behaviors to “help” her seem more NT. But everything in my mammas heart says that is nuts.. that my girl can be who she is and everyone else can deal with it. I so appreciate your insights and the whack a mole metaphor makes a lot of sense… if you need to get stimulation for your senses you’re going to get it somehow!! I think a lot of well-meaning parents believe they “need” to do this to help their kids have friends… the thought of their kids being even further outside a social paradigm breaks the heart of NT parents who assume their kids wants all the same things that they do from a social setting. But it may just be that my daughter would rather stim and be accepted by those who dont judge, then be accepted by a broader group of people and have to suppress her needs for sensory input. Thanks again. 🙂

Welcome! I love your outlook and I think you’re definitely on the right track.

As a kid I was friends who other kids who accepted me for who I was. That often meant I was friends with the other kids who were also different: the girl with four fingers on each hand (whose mom was divorced, which was taboo in the 70s), the kid who ate paste, the girl with albinism, the girl with eczema so bad she had to wear gloves to school many days, the girl with epilepsy, the boy who cut himself on the school bus, the girl who everybody thought her father practiced “black magic” (they were recent immigrants in a predominantly white community). I never saw any of them as weird or outcasts and just felt happy that they liked me and we were friends. We were an odd bunch for sure, but that didn’t stop us from enjoying our friendships.

Things are much the same in adulthood. I’d rather have one or two friends who like me as I am. Being someone I’m not is exhausting and demoralizing. I’ve tried it. It doesn’t work. Plus it’s hard on the self-esteem.

You also make a great point about what your daughter wants/needs from a social situation potentially being different from what a typical child wants/needs. I was often puzzled by why adults thought I needed more friends when I was happy with the ones I had (even if it was just 1 or 2 at a time).

Thank you for your response and I agree with all of your points. I do not have an ASD diagnosis of any kind of but I was always an “oddball” growing up and those very same kids were the ones I would have been hanging out with, too, and I wouldht have had it any other way! 🙂 So I thank you again for your critical insight for me as a mom. We are connecting with an occupational therapist soon to see if there are any other ways we can help our daughter have her sensory needs met, and we’ll just continue to love her and encourage her to be herself. Love the blog, thanks so much!

I think OT and meeting sensory needs is super important. I’ve heard a lot of parents of autistic kids say that the OT (and things like adaptive swim) is the one kind of therapy they feel had a big positive impact with minimal “cost” to their kids.

I’m so glad I read this. My daughter has been diagnosed with Selective Mutism but she also has a lot of sensory issues. The past few weeks this summer she has been doing a couple of “weird” things. She’ll hold her hands over her nose – kind of cup her nose for long periods of time. The other one is she puckers her lips out like a kiss and then makes this deep inhale/exhale sound through her nose. It never even dawned on me that this could be a form of stimming. I keep pointing it out to her because I can’t help but think, what the heck are you doing?? I’ve even told her that she better stop before it becomes a habit. I won’t be doing that any more.
Can I ask you guys something – I think maybe you’ll know answers better than any of the professionals we’ve seen. She also tells me that she sees lights sometimes. I asked her if it’s just when she rubs her eyes and opens them. She said no. She told me that when she was little, that sometimes lights would shoot off her bookshelf and go across the room. Some of the light would fall on her head (like in drops). Can anyone shed some light on this?

It’s great to hear that this has helped you understand your daughter a bit more. It definitely sounds like what she’s doing could be stimming. It takes so many forms and it’s different for everyone. I wonder also if she’s cupping her hands over her nose to block out a smell that’s triggering a sensory sensitivity? Just a thought. Lots of people stim by smelling.

I’ve never heard of the light thing but perhaps someone else will chime in here. Perhaps it’s a form of Synesthesia? You might ask her if she sees the lights when she hears a particular sound or try to figure out if they’re associated with some other specific sensory input.

Oh, that’s an interesting one! I think I know what she means, but I might be wrong. I used to spend hours (well, probably about 15 minutes but it felt long) following coloured spots and lights across the room. And they kept moving around! When I got older I realised that my eye movement was actually what made the spots and lights move. If I kept my eyes “still” they only drifted a little bit (probably because I still tried to focus on them).

I can only guess at what makes my spots and lights appear, it does seem to be linked to visual overstimulation. Like how you see a big spot in front of your eyes if you stare at a lamp too long. For me it might be looking at the leaves on the trees or reading. It’s a guess but I hope it helps.

Oh guess what? I just had a shower of the most beautiful sparks falling in front of my eyes. It only lasted a couple of seconds though. I think it was because I’m feeling tired and got a bit overstimulated by the sunlight in my room. It was very pretty though. 😀

No one seems to have mentioned this yet, but I’ve been told that there’s a link/correlation between autism and the visual disturbance / migraine with aura / scintillations symptoms of migraines. It also seems that autistic people are more likely to not experience the pain aspects or migraines and only report the visual oddities or other less typical symptoms (for example another friend mainly experiences dizziness and confusion with no pain and only the visual disturbance was a tip off that migraines were involved).

Having the visual or other sensory symptoms of aura migraine without the headache/pain is rare and many doctors haven’t heard of it, but it is a recognised condition known as ‘acephalgic migraine’ or ‘silent migraine’.

I have three or four autistic friends who report migraine with aura symptoms, all but one of which don’t get the pain or experience it rarely. There’s a link with stress but a couple of friends have also found that sensory sensitivities can set off visual disturbance and other migraine symptoms.

Here is one more question…I always think of Aspie’s as talkers. I believe my husbands brother is Aspie. He is very smart and he will talk on and on about subjects that he finds intersting. Generally I find him quite entertaining. My daughter will talk non stop to me. But she is mute at school. I guess I assumed because she was mute in certain situations that she could not be Aspie. Is this incorrect?? I’m just really struggling to figure her out.

I was often mute in school. There were teachers who didn’t know my name until November because I never raised my hand or spoke in their class. Actually the same was true in the university classes that I took a few years ago, so I guess “was” is an exaggeration. However, I’ll talk a lot with people I know very well. In fact, they’ll often have to tell me to stop. In other settings, especially group settings, I don’t speak much if at all. I wonder if this happens more in girls than in boys?

I’ve always been extremely quiet in school, except when I was asked a direct question. My mum commented on the talkativeness the other day, saying that it didn’t really take off until during puberty when I became more sure of myself and the knowledge I had.

I became very quiet in school in response to being bullied. I was extremely talkative and a bit of a disruption in class until around fourth grade (if you like Harry Potter, imagine a combination of Hermione Granger and the Weasley Twins, and you have about what I imagine it was like for my teachers to have me in class in those years. Smart know-it-all who would raise hell when bored), by which time bullying had taken such a toll that I stopped talking as much as I could. I could go for days without speaking. That continued until I graduated high school, and in university, I found my people and became talkative again. But in large groups of unfamiliar people, I’ll shut up. Because I’m scared I’ll say something wrong and get made fun of for it. Safer to shut up.

My daughter is actually the worst with direct questions. If you want to make sure she won’t respond to you, you just need to make eye contact with her and ask a question. She might say yes or no or nod if she is very comfortable with you but beyond that she won’t go into any detail. Or if I ask her, “why are you sad”, then I just get the blank stare!

Oh but questions about emotions are so incredibly hard! I’ve written about that with regards to maternal feelings I didn’t think I had, but there’s more on that subject bubbling away in my head. I can’t remember how I phrased it exactly but it’s like every time a therapist asks me “how does that make you feel?” I run into a brick wall and immediately lose my focus on how I am actually feeling and instead frantically have to start looking for words that will be sufficiently clear enough to explain to the therapist. Instead of simply allowing myself to FEEL things. So yeah, a question like “do you want some breakfast?” (what do I want? I don’t know what I want! what will happen if I say no?) or “why are you sad?” (sad? is the thing I’m feeling called sad? what will happen if I say yes? oh wait that wasn’t the question, the question is why?) would make my brain go into overdrive as well, and I’m 36!

The direct questions were more in relation to school things. Like having to show my grasp of the subject.

P.S. the look I get when my brain goes into overdrive? “Blank” is usually how my loved ones call it. Coworkers or other social contacts tend to range from “blank” to “arrogant” or “dismissive”. I have no idea how I look but apparently it’s not friendly or engaging.

I know what you mean about the blank face. For me I know that I need to change my approach with my daughter or leave her alone for a while. But when we are out, I know that people think she looks grumpy and unfriendly. Which is so completely the opposite from her true personality. She is a sweetheart. I just hate the way people perceive her. Even my mother onces suggested to me that she was just stubborn and perhaps she needed more disipline. Ggggrrr…well she has since started educating herself but boy did that comment make me made.

It’s my nature to always look at the other side of an argument, even if it isn’t the side I’d take or it isn’t generally my POV. Imagine the trouble I got into when there was an issue with/between my wife and exwife… as much as I wasn’t a fan of my exwife, I couldn’t stand having an unbalanced story told, and I’d correct the story… just to be told I was “sticking up for her” when all I was doing was sticking up for balance. With that long winded story established, I’d like to present the other side to some of what you wrote.
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“Oh, wait, I know: socially inappropriate stims are ones that draw attention to us. If you rock in public, people will stare.”
Yes, they will stare. It’s human nature to stare at things that are distracting. If you can stim, why can’t they stare?

“And whose problem is that?”
I don’t see it as anyone’s problem. It sounds like some people want to stim, yet have it go off as if it weren’t happening. May I suggest that for the NTs, their staring is their natural reaction (which isn’t usual among adults… certainly not in my experience. If anything the mantra has always been “don’t stare”). Isn’t staring every bit as natural, and therefore acceptable, as is the person stimming? Seems like one of those goose and gander moments to me.

Try out these sentences instead:

“If you sign in public, people will stare.”
At first, yes. If it’s a child? Certainly. Watching someone sign is fascinating. I guess it’s like the person with a wordy t-shirt that then takes umbrage with those that try to read what’s on it.

“If you use your wheelchair in public, people will stare.”
Children will stare, but wheelchairs are so commonplace now, I can’t imagine why an adult would stare, unless the person was more than just physically handicapped, and a non handicapped person was feeling sorry for the other (a perfectly normal and healthy human emotion for those that we encounter that are in more difficult existence than we are) and looked for longer than a general glance.
“If you limp in public, people will stare. If you use your assistance dog in public, people will stare.”
Same as above.

I hope my “devil’s advocacy” was ok here.
—
Being new to the terms of autism, I’d never heard ‘stimming’ before. I don’t remember doing anything that was as overt as some of the things I’ve heard described. I was more likely to get lost in a project, and not want to be interrupted. I know that one thing I’ve done as an adult sounds like it could be considered ‘stimming’ of sorts. If I’m in an uncomfortable, especially in a face to face situation, I find myself stiffening, and if I’m holding something (like a vacuum when I was cleaning houses full time) I squeeze it, getting white knuckles of sorts. I’d listen to the person and if I felt intruded upon, I’d feign a grin and curl my toes while squeezing a towel or something handy… hoping it was going under the radar.

We’re actually on the same side. 🙂 That whole section you pulled out is sarcastic. I’m making fun of how ridiculous all of those statements sound and basically saying who cares if people stare? (I wish there was a sarcasm font because when i write stuff like that I hear it in my head in a sarcastic tone which of course doesn’t come across on screen.)

It’s usually the person with the autistic person that is most conscious of the staring or attention it draws and one of the reasons people give for stopping kids from stimming is that stimming will draw attention and that’s bad. But they’d never say the same thing to someone in a wheelchair, etc because as you pointed out it sound silly. But it wasn’t always. There was a time when having a visible physical disability was stigmatizing in the way that stimming is stigmatizing today. Somewhere up there in the comments I gave the example of FDR concealing his disability from view during his presidency because of the concern it would have a negative impact on public opinion.

Creating tension in a part of your body is a form of stimming. I do it when I’m in a situation where I don’t feel comfortable stimming in a move visible fashion, like an important business meeting. Touching things–rubbing my hand or fingers over a surface–is also one of my covert stims. 🙂

“It’s usually the person with the autistic person that is most conscious of the staring or attention it draws and one of the reasons people give for stopping kids from stimming is that stimming will draw attention and that’s bad.”

So true – but as a Mom you just have an instinct to protect your child I think. It’s not ill intentioned but it is wrong. I think really people in general need to be more aware of autism, what it is, what it looks like ect. If I see a blind man walking with a guide dog, I will take notice for sure. My kids would probably stare because it is different from the norm. They are curious. And frankly if someone is stimming in public, people will take notice. But if they understood why that person was behaving that way, they would be far less judgemental.

I just want to say thank you to all of you for your comments. It really provides so much insight for me and I really do appreciate it:)

I think you make a good point as well. That sometimes a parent will try to stop their child from engaging in behaviour that marks them as different because they feel embarrassed themselves (strangers can be harsh in judging parents for “not teaching their child manners”), and sometimes a parent will try to stop that behaviour because they simply don’t want anyone to hurt or make fun of their child, out of a fierce protectiveness.

I think a lot of us have made it very clear to parents that even the latter kind can be unintentionally harmful, but it doesn’t hurt if we show that we’re aware of the difference in intention as well. And seriously, I just want to hug every parent who’s open to listening and understanding that maybe things are different for their child than they’d always assumed. It’s just awesome and I salute all of you.

I get this as a mom. My daughter got unwanted attention for being nonwhite in a mostly white town. There was very little I could do about it and that was hard but she survived it and learned a lot along the way.

I’m glad the comments are helpful. There is a great group of people who share their knowledge and experiences here and I’m grateful to them.

Feelings-questions are hard for me. Preference ones are easier, and being asked to make choices are easier still but not easy per se.

I have to look away to think when I’m asked a question. But when I was a kid, I’d had eye contact pounded into me by my parents (“Look at me when I’m talking to you!” that sort of stuff), so I felt I couldn’t look away. But eye contact is hard to describe, but it’s like it drives a spike through my thoughts and pins them in place. I can’t think about anything but the question, and my brain goes in circles – whyareyousadwhyareyousadwhyareyousad – but I’m trying to think of words to answer so I don’t get called evasive or get yelled at about how it’s just a simple question but I can’t so I usually just shrug. Maybe a few hours later I can think to explain I was sad because [insert reason here] or that I wasn’t sad at all, I was just concentrating. If I was very unlucky, I’d verbalize the brain-in-circles part as a kid, and then I’d get yelled at for being bratty because I guess they thought I was doing that thing that kids will do to be obnoxious where they repeat something someone said in a snotty tone of voice?

Your approach to questions is interesting. Though this hardly is comparable, there is a word game that is printed in the newspaper called The Daily Jumble (or just “Jumble” for short). I started playing it with my aged grandmother when I was in my late 30’s. I’d stare at the words, and I usually couldn’t unscramble them. It was an agonizing process… then one day while working, I cut the jumble out from the paper and glanced at it while I was vacuuming. Voilà, the first word unscrambled itself in an instant… still vacuuming, the second word came to me nearly as quickly, and before I knew it, I could finish the puzzle in under a minute. (Not every time by any means, there are some letter combinations that confound me). Point being, that if I stopped concentrating, I could get the answer… it sounded similar to what you just posted about questions.

SS, my daughter (20) has never been diagnosed with any disorders, she will lock up over being out to dinner and being asked by a waitress what she’d like. I’m thinking that didn’t have “major real world consequences” attached to it either. Most things in life, are mundane, and do not come with noteworthy consequences. I’m not sure what benefit there is in devaluing a persons input. I’ll assume I missed some very clever sarcasm on your part. My bad.

It was not sarcastic. Maybe for you, what people think of you based on your communication style doesn’t have major real world consequences. I’m guessing, from the tone of your comment, that communicating in an assertive way isn’t very difficult for you. In fact, maybe for you, most communication doesn’t have major real world consequences. But I can assure you, communication style DOES have major real world consequences for people who are trying to survive in that square peg round hole thing.

ssbluridge, are you talking about like how I was always teased for liking boyish things as “major real world consequences” for expressing my preferences, interests, and comforts? Stuff that most people wouldn’t think comes with major real world consequences – like, say, expressing what you do for a living, or your aspirations in life – do come with major real world consequences for me because I’m greatly gender nonconforming and so every.single.choice I make is scrutinized for whether or not it conforms to gender roles and stereotypes and if it doesn’t, I get backlash (called “he,” told I’m not a “real girl,” etc) and if it does, I also get backlash but of a different sort (patronized, told others will make a “real girl” of me yet, etc). It feels to me always like society is at war with me over who I am, and even minor things are really battlefields on which said war is fought.

For you, it’s just relaying your hobbies. For me, it’s defending my right to be who I am and trying to decide whether it’s worth this particular battle for the eleventybillionth time this month.

AC, What I don’t think is very fair is that my example gets belittled. I’m trying to participate, but somehow, my experiences don’t amount to much. Isn’t that the very thing you’d complain about when NT’s don’t understand the need to stim? The “consequences” are real enough to me… be it the puzzle, or my previous example of sending a “drunk” email.

Ischemgeek,
+1 for “Eleventybillionth”. I love to use that too, along with “bazillion”.
I’m sorry that you have to deal with people that want you to conform their views on gender. I read ugly words, form those types of people all the time (yahooNews for example), and I simply do not understand where they are coming from.

Uhhh… yes and no. Questions I kind of blank on ordinarily and that might be over-concentration like you mention, but then there’s the eye contact thing. Even if I’m talking ordinarily with people, if someone’s looking right at my eyes and I lock eyes with them, my train of thought derails and I’m just, “Uhhhhh…. uhhhhh….” and it’s not an anxiety thing, it’s a wording-thoughts-has-stopped thing. Hard to articulate, but it’s really hard for me to make words happen when someone’s locking eyes with me.

Hello: I just signed up to follow your website. Firstly, Thank You, for creating such a wonderful site! Also, congratulations on your book!
When I confirmed my following of your posts it brought my attention to the topic at hand. I have empathy for any and all who suffer (as I do) with Asperger’s (actually any/all mental/emotional/physical ailments). Children seem to be a soapbox with me. I dislike thinking of any child (actually, any person) to be snubbed; bullied; dismissed or to not be allowed to be “their uniquely individual self” . True there are things we all “know” are inappropriate or, if one is too challenged to know on their own, I hope they have someone who cares about them and helps them.
I am new here, so again I say thank you and to any and all who post I thank each of you as well! Learning one is not alone and in the same token that many are being helped is truly a blessed thing. Respectfully and Sincerely…my best wishes to one and all.

Oh, how I love this post.
I am not fond of the phrase “socially appropriate” either. Often “socially appropriate behavior” just means “what the people with privilege would prefer you to be doing”.
I especially dislike talk about “socially appropriate conversation topics” because the “special interests” of a person on the spectrum are often seen to be automatically inappropriate, meaning the person isn’t allowed to talk about anything they like… and then everyone’s surprised when they choose not to socialize.

i have not read all of the comments, there are so many that i find them overwhelming!

i am not on the spectrum (well, that aspie quiz said differently, but i am not diagnosed and tend to do ok socially, so who really knows), but i can’t for the life of me figure out why a lot of folks have an issue with stimming. my partner’s daughter is on the spectrum and her stimming is the least of her problems, in my opinion. i have a lot harder time with some of her other aspie traits then i do with her stimming.

the only time i have had a hard time with someone stimming was when it was a behavior that caused me distress due to my own sensory issues, or it overly involved me and my participation. i have a brother who is autistic and has intellectual disablilities. he is often sensory seeking, especially with certain sounds. he really likes it when i fake sneeze for him, because he LOVES the sound. in practical terms, this could mean fake sneezing for over an hour when i have other shit to do!

when the stim has nothing to do with me, and doesn’t disruprt my sensory stuff (and 99% of the time it doesn’t), then what’s the big deal? i’d rather spend my time helping my fella’s daughter cope with her anxiety then fuss at her about stimming.

Fake sneezing for an hour would be quite a feat. It’s cool that you do it at all for him. I don’t really understand why some people are so adamantly intent on stopping kids from stimming. It’s just not a big deal in most cases. And stimming actually does help with anxiety, so it’s win-win in your partner’s daughter’s case.

part of the reason i do it for him is because we live far from each other and i only see him a couple of times a year now. it seems to have become part of our greeting ritual, although i know he does it as well with people he sees more frequently.

i think that a lot of people, including neurotypicals, stim. i play with my dreadlocks a lot, especially when i am feeling anxious. and other people do their own things….

I love this post. I have seen very sad instances of a kid being told to not flap his hands when he was excited about going down a tubing slide (snow tubing), “quiet feet” repeated for a child who needed to move his feet and was not kicking anything, and on and on. It is disturbing to me and to my family to witness these instances. It’s probably worse for the children who are being directed to NOT MOVE in the ways that are comfortable for your own body.

Okay I know that this is an old post but since there’re so many people who have who have been giving your input on it I hope that you can come back and help me out with this. I have a 15-year-old aspie and a four-year-old…I guess you would say classically autistic child and my older son it’s fairly easy to figure out about stimming…how to make it a little bit more socially acceptable not because I’m worried about him fitting in…more because I am just keeping him from getting in trouble in the classroom and distracting the other students. Therein lies the problem and I’m more asking for my younger son. His main stim is jumping up and down and running back and forth across the room. And while he’s allowed to do that at home and he’s perfectly fine and I’m perfectly fine with it, obviously you know when he goes to kindergarten he can’t run across run back and forth across the room and jump up and down the entire class. It’s going to distract other students. So my question is where DO you draw the line between shaming them into socially acceptable behavior and keeping them from distracting other people and getting in trouble all the time at school. Home is a safe place for him but with integration and everything just what would you suggest as a solution to this as autistic people?

Well, first, he won’t be 4 years old forever and his preferred stim will likely change as he gets older. Until that happens, you could try to help him channel his running and jumping stim into something that will be less distracting in a classroom setting. There’s a difference between substituting one stim for another and shaming or “quiet hands”ing a child. The line, I guess, is compassion. The first one is a compassionate act and the others are lacking compassion and empathy for the autistic person and the way their brain and body work.

Thank you for your help…kind of along the lines I was thinking…but seems like there is so much on what not to do and the theories behind it but not as much practical here’s some alternatives stuff. As a parent navigating these waters it can be confusing…eg I know not to force eye contact and argue against it being one of his goals…but is gentle encouragement to do so ok? So many things are such fine lines. He takes a very small dose of a mild med before preschool to help him focus and calm and then at home it’s worn off and he is allowed to do whatever he needs. Sometimes there is that thought I should do more at home but then I check myself bc y’all have at least taught me that. Thank you..and all the others…for helping me to help my two kids. I’m sure I still screw up royally every day but I often contemplate what if id never found this valuable resource? Would he still be the happy go lucky kid making giant leaps?

Yeah, I totally understand your frustrations. If he needs proprioceptive input, you could try things like giving him an exercise ball to sit on instead of a chair (assuming kids in kindergarten sit at desks?) or arranging for him to be able to leave the classroom to a safe place where he can stim by running/bouncing and then return (I know of several elementary school age youngsters who have this accommodation).

Eye contact . . . I can see both sides of this issue. Not making eye contact sometimes causes people to make unflattering assumptions about me but on the flip side, eye contact is uncomfortable and doesn’t help me at all in social interactions. I know it’s hard to imagine, but I get zero usable information from eye contact or faces. If anything, it makes interaction harder by creating an unnecessary distraction. So I sometimes fake eye contact to make other people comfortable but it’s hard and useless for me (I have a post about this, actually). The question then becomes, who is the eye contact for? Faking it with strangers sometimes causes people to see me as less odd but that’s the only benefit I get from it and often it’s just not worth the discomfort.

I’m not saying this is true for your son. Just that if he’s not naturally making eye contact, there is probably a reason. If eye contact is sign of attention and that’s what you want to encourage, you could find other ways to ask him to show that he’s listening, such as verbal or gestural cues. Sorry, I think now I’m just rambling. 🙂

Its ok I do too especially on phone where i can’t see much of what I’ve written. I have trouble w eye contact myself but think really it’s more about appearing to pay attention by NT standards. Sometimes he does but I also know that he can be wildly jumping on the bed and still be paying attention…he stops mid jump to race over and do his part of the routine…it’s actually pretty funny. But if you know him well you can tell when he’s just totally checked out and when he’s still paying attention. The trick is…and will be even more later…to clue everyone else in and to pick which battles are the most important to fight them. I do think at an appropriate level of understanding that another posters explanation was excellent about explaining in a way that points out what ppl might assume instead of making them think it’s wrong in itself….lol see now I’m rambling…time for a quick catnap before my little Taz gets off the school van 🙂

Since learning how other people use eye contact, I’ve tried to develop other “paying attention” signals to use when talking with people who don’t know me well and that seems to help. It’s great that you’re trying to find solutions for to help him navigate the world and also that you are able to read his body language and help him be himself at home. 🙂

Reblogged this on Lynnette's Space and commented:
Hey all us norms need to read this! Come on kids Auspie’s are not broken. they don’t need to be fixed. They should not be forced to “fit in” to our normality. Rather, we should expand our idea of normal to include theirs!

I have really enjoyed reading this post, and all the comments. I am a teacher, and most of my students have autism. I teach very young children, most of whom are non-verbal. Thank you for giving me some insight into how they are thinking/feeling, since most of them can’t tell me.

Thank you so much for this. My 5 year old has Fragile X and we LOVE to flap, it is one of my favorite things about him. What a better expression of joy than flapping. What’s more we ALL have stimming behaviors — neurotypical or not — rocking, nail biting, lip licking, hair twisting, hangnail picking, every single person has something they do to stim. Let’s embrace it!

Yay for flapping! I’ve only recently gotten my flap back and I love when people join in. Before Christmas, I was picking my (nonautistic) daughter up at the airport and when I saw her in the baggage are I started flapping. She didn’t even hesitate to flap right back at me. 🙂 It made me so happy. I bet your son feels the same way when you flap with him.

I’ve often wondered what makes something “socially inappropriate.” There are things nonaspies do that might be considered stimming. Chewing on fingernails, for instance, or twirling their hair or tapping a foot. Why are those acceptable and rocking and flapping aren’t? I’m beginning to realize that my son needs to be who he is, and that makes everyone happier.

I love this article. I deal with this issue daily at the school I work at. Some of the therapists I work with keep the kids from engaging in “stigmatizing” behaviors, like flapping, spinning, etc., when we’re in public. Who exactly is feeling stigmatized? Cause I can guarantee that the student engaging in those behaviors couldn’t care less. They enjoy it, and it keeps them calm in an otherwise stressful situation. If people stare, I’ll ask them not to. It’s not my students’ problem if people aren’t used to seeing a person stim.

My son use to beat his chest, when he got old enough to understand I asked him not to do it in public. I told him that other people would think he was not smart and less than them and treat him badly and that he was smarter than most the people around him! Ive never been uncomfortable with any of my sons behaviors but I do want him to be treated with respect and have a fair chance in life. There is not enough room on this blog to express how horrible we were treated when he was younger. If I had believed all the “professionals” he would have been institutionalized and on meds for the rest of his life! At 16 he is AMAZING! Public high school,no meds,writes short stories. Next year he starts college! Each situation and each child is different,with different circumstances and different capabilities …..The most important thing is to treat others the way we want to be treated,and always walk in love

There are a couple of keys here that I want to point out to anyone reading this. Specifically that you waited until your son was old enough to understand what you saying about people’s biases and that you explained in terms of other people’s judgment of him being wrong and damaging. Because I’m afraid people will look at your successful example and miss out on the approach that you took.

Congratulations to your son on his accomplishments! He sounds like a fine young man.

I want to preface my statement by making it clear that I am not against children stimming in public if it is necessary for them, and as long as isn’t physically impeding myself. However, I don’t think it’s a bad idea to use stimming as a way to infuse socially acceptable behavior into autistic children. But only because I think ALL children need to be much more aware of how their public behavior affects the strangers around them. I’ve had drinks spilled on me in public because a child’s acceptable “stimming” behavior was simply not acceptable behavior! So if a child wants to sit under the table while we’re at lunch to stim that is fine, but when the child starts purposefully knocking the table about then it is just misbehaving. Go violently rock somewhere where you won’t spill food and drinks everywhere. My point: let’s make sure we are guiding these children to stimming behaviors that won’t annoy the shit out of the people around them. (And for me, this goes for ALL CHILDREN. When I was a child you never saw or heard a child relentlessly misbehaving throughout the store. If my mom said “No” she meant it and I shut up.) Yes, I will likely come across as the bitchy, childless woman. And I am. But I have a right to not be annoyed by your children in public. But, in fact, I am a total lover of all babes, and even when they are annoying little turds I understand that it is due to iffy parenting more than anything else. And in the case of autistic babes, even more understanding is needed. Which is why, more than anything, I want to make sure we aren’t setting these autistic children up for failure. Do we want them to be ridiculed in public for their stimming behavior? Wouldn’t it just be easier to guide them to something more or less unnoticeable by others? Or, if that isn’t possible at all, maybe reconsider where and when you try to get them out into the community. I’m sorry I’m not trying to be heartless, but I’m just really tired of putting up with the annoying behavior of other people’s children.

I get what you mean, the main problem with taking that as a goal in teaching children is… define annoying behaviour. It’s completely subjective. One person can flip because a child is humming softly to themselves, another can easily deal with flapping and twirling incessantly. Everyone has their own “annoyance” limits. And with our black-and-white thinking, and inability to pick up social cues, it’s really hard to teach us that it’s OK to act a certain way in one situation, but absolutely not OK to act the same way in another situation, depending on who’s there and what methods they might choose to express their annoyance! You can’t be consistent in that kind of teaching, and consistency in rules is what autistic kids need.

I have 2 with autism. Daughter 19, she meows and makes penguin noises… I don’t mind, and if others do, so what… My daughter does this when she is stressed and she can’t find words. I understand her, and those close to her understand her too… that is all that matters. My son 17 is severely autistic, and I HATE when people have the nerve to tell him not to flap his hands or giggle or rock… I let him. I have a very simple belief. We ALL stim, we all find ways to soothe ourselves. Some rock, some twirl their hair, ring their hands, all people have some kind of stim. Like I tell my kids, family and friends, and sometime strangers… unless you are my child or the person raising my child, don’t tell me what is best for my child… If my child is stressed to the point they can not handle it, I take them out of the situation but if they need to stim, then I let them. They are not hurting anyone. If you or anyone has a problem with it, so what. I have a problem with people who insist that I force my child to fit their idea. My goal is to help them, not stress them more. I do consider other people’s feelings. And I don’t allow my children to get to the point of meltdown, because I am in tune with them and know their limits. But as far as them stimming I let them.

Hi. I’m a paraprofessional in the ABA field (basically just starting out) and I’ve been doing a lot of research on stimming. My supervisors all push for us (the tutors) to replace stimming with more ‘socially acceptable activities’. I honestly don’t see the point of doing this if the stimming isn’t harmful to the child or to anyone around. I.e dropping rocks or spinning toys, etc. However, what about slapping? Sometimes, slapping the table will turn into slapping any person around. (Not meanly, but people don’t understand that. ‘Hitting is hitting,’ is what one teacher said to me.) Basically, my question is, in these situations is it beneficial to replace the stim? I.e. shape slapping into clapping. I never want to discourage stimming behavior, and I see that it is harmful to try to shape it to be ‘socially acceptable’, but in cases where a person starts to harm themselves or others (even unintentionally) is it a good idea to try to replace that behavior with something functionally equivalent? Or is there something else I could try?

I hope you’re able to keep your outlook on stimming as you become more experienced in your field because it’s refreshing to hear you say this. I am definitely in favor of helping kids replace dangerous stims. (Dangerous being actions that can injure themselves or others, especially those that cause permanent damage.) It can take time to shift a stim into something less harmful, but it’s definitely possible and will result in a lot less stress for the autistic person than insisting that they don’t stim at all.

My son has a stim where he walks/rocks. One day, my husband said to him, “walk right.” I looked at my husband and said, “since when did you start to give a f@@@ what other people think?!” He hasn’t tried to stop my son since. I know he is worried that others will stare or mock our son, but we have to model the acceptance for others.

I have two children with autism. My 12 year old swings every single day because it calms him down. My 10 year old disappears into her own world complete with sound effects and bouncing on the couch. She’s smiling and laughing. She does it at school and the teacher lets my daughter “escape into her own world” because it brings her back to a point where she can focus. My son is outgrowing a lot of his stimming, but my daughter is still going hard. If people stare, I tell them that my daughter is overstimulated and this is the way she unwinds. In public and at school, she’s not over the top but she does check out for a few minutes. At home, she’s in her own amusement park, laughing and talking. I will tell people exactly what my kids are doing. The one thing I refuse to do is tell my kids that they are not allowed to use tactics to calm themselves down in public. If people don’t like it, that’s THEIR problem.

You sound like a terrific parent. And you pointed out something that I think a lot of people miss – the way we stim naturally changes as we grow older. Many of us who loved to bounce on furniture or slam into walls as kids have found must less obvious and just as fulfilling ways to stim now that we’re adults. Allowing this to happen naturally is much less stressful than trying to force-stop a stim.

This reminds of a math class I had in the 9th grade. There was a boy in there–who knows if he was considered an NT or not, or whether he fell anywhere on the spectrum–who constantly drummed his fingers on the desk. He clearly couldn’t help it, and it irritated the teacher to some extent as it was loud and disruptive. Plus, he was one of the popular kids, so all the other boys copied him. I never understood why our teacher didn’t just shut him up, until one day he showed up with a roll of rubberized cabinet liner and cut the little drummer boy a hefty piece. Problem solved. He could now drum his fingers over the liner on the desk to his heart’s content, with minimal distraction to his classmates. When I saw that, I thought “He won’t use that, he’ll look weird.” But he did. It was one of the coolest things I ever saw a teacher do.

Thank you for this excellent post! I, too, strongly dislike the phrase “socially inappropriate.” It isn’t just used for stimming, either.

I was at the park the other day when an obviously autistic pre-teen girl, who was visibly struggling to make conversation, asked a young woman “How old are you?” The girl’s mother or babysitter quickly admonished, “Oh, we don’t ask THAT” in a tone of disapproval. I wanted to smack her. Fortunately, the young woman to whom the question was addressed just smiled and said “I’m 22. How old are you?” Still– how horrible to be encouraged to socialize and then scolded for trying to do so!

Education has to start through educating teachers, the amount of arguments I have had with schools and teachers because they have not only tried to stop my son rocking or tapping but have publicly punished him and humiliated him in front of his peers with responses such as detentions, lines, missing out on activities or making him stand in front of the class. On occasions other children have teased him over this I have been told it is his fault as his rocking or tapping is annoying the other children. I go through sorting this with one teacher and they will have a new teacher or a supply teacher come in and I have to start again. My son is high functioning aspergers with above average academic intellect but under stress or anxiety will always result to these minor stimming methods to cope. He is doing so well socially now after a lot of therapy and hard work from him and most people don’t even realize he has aspergers any more, yet it is frustrating that even though he overcomes many challenges every day he still gets punished for such a small indiscretion. SCHOOL STAFF MUST BE TRAINED ON HOW TO HELP APSERGER’S CHILDREN NOT PUNISH THEM.

You know, an adult on the spectrum who’s been told countless times it’s inappropriate will mind when stimming and feel so bad about not being able to control it, or will force themselves to control it and blow up harder later.
Or just plain stay inside and stop having any social interactions, that way I can be inappropriate in private.
I had tears in my eyes when reading this. If even books supposed to help us do this… how are we supposed to get proper help?

I can imagine that!
I am putting together an account of my own experience – and friends who have autistic kids often turn to me to ask and talk, but I feel it won’t really help: I haven’t got a job or a “real” social life, how am I supposed to give hope to parents?
It’s the first time I dare putting that question down…

It’s brave of you to put that question out there. I know how hard those things can be to say “out loud” for the first time.

My answer would be that every person’s experience is valuable, no matter how atypical it is. Having a job or friends or living independently or being married doesn’t make one person better than another. What parents are mostly looking for is to know that there is someone else like their child and that’s definitely something you can share with them.

Thank you so much for this post, I love it! As a mother of two boys who are Autistic, I have never told either to stop stimming. Clearly they need to do it, makes them feel good, and it certainly isn’t hurting anyone if they need to twirl or hand flap etc.

This is a comment that has no point at all apart from giving me the opportunity to check the “follow comments” box because I forgot on the other comment.
Though there is a metaphor that came to my head.
You know those people who go on a vacation and expect everyone to cater to them? As in every kind of service personnel needs to talk English because well, they don’t want to learn a “I would please like to order x” or “I have reserved a room” in the foreign language? Or those people who make a big cruise but expect to have all their regular foods even if they are not at all common in different countries? Or try to lecture people who don’t serve meat that is for example forbidden for a muslim how that was so culturally repressed, but will then demonize them for something they offer “how could anybody eat that”?
Nobody likes that kind of tourist. They are made fun off, called close-minded.There’s the stereotype of the German who goes to Mallorca, goes to a German hotel and eats his Schnitzel every night.
But isn’t that the exact same way that many NTs act around autistic people? That they expect courtesy from autistic people but are not at all prepared to reciprocate?

This is wonderful!!! My parents actively discouraged stimming and forced me to stop, so I took up smoking instead, much to their chagrin!! People don’t realize that there are far worse things than stimming. I have gone back to it now that I quit smoking. When I see it in others, I find it charming rather than weird, but maybe that’s because I know what it is and understand its purpose.

About a year or so ago I started studying Ving Tsung Kung Fu (also Romanised as Wing Chun). Part of the study of this martial art involves transitioning from one “hand” to another. Through repetition I’ve got most, if not all, of my “flapping” to conform to these hands (the “feel” of the movement is similar and equally satisfying). If anyone asks, I can start a conversation about my martial art and show them how the hands and the transitions have a “practical” application. It’s a mask, but it works. I haven’t figured out how to explain rocking or bouncing yet, but I think I can apply them to the “second movement” and maybe make it sound good. 😉

I get so confused when I read stuff about autistic kids. ALL kids fidget, twitch, and can’t sit still. If they’re not, you probably need to get them to the hospital because they’re half dead! For all my ills, I was usually the example to the class how to behave because I’d often sit quietly and read a book instead of bounce out of my seat and tear the room apart. If you ask me, socially appropriate stimming involves not accidentally hitting somebody or knocking something over, which is still more than you can expect out of a normal kid.

… this subject merges perfectly with the topic of acceptance … as so many have mentioned, as children we were forced to be still like all kids. But I believe NT children (most of them) can be especially still during stressfull events where an aspie may need to stim to relax – some examples of this contrast might be a car accident, a funeral or similar situaton where adults are behaving differently, or when people are arguing.
I dont mean to say Aspies wont stim for other reasons at other times
– when im perfectly relaxed going to sleep, i like to drum some tune on the matress or metal parts of the headboard – I love the bass hum it creates. I also sometimes tap my foot fast & lightly against the sheet – I never thought anything of it I woried about it – except on two separate occasions when my daughters were visiting they were annoyed by it.
And somehow reading that this activity is an actual defined thing has somehow taken the pleasure out of it.
I hope I forget what its called and can return to the absentmindedness of it.

This is kind of, not funny, but coincidental, that I read this now because just the night before last my family got together at Essenhaus for a Halloween dinner and I kept rocking, and rocking, and rocking. Every time I forgot to stop myself I found myself rocking, either side to side or forward and backward jouncing off the back of their lovely conducive chairs.
I really don’t know why I’ve been so stressed, because I think that’s where my constant rocking is springing from of late. Even now I find myself rocking, back and forth, back and forth. It’s a soothing thing for me. Love this post, as I love all of your posts. It is so wonderful that you are so talented – just plucking things out of my life and putting them on paper. 😀

I think it will; as soon as I settle into my new school year and get a rhythm on exams and essays and research papers I’ll be fine. It’s the anticipation that gets me into knots – the actual experience isn’t that awful, I just need to relax and go with the flow and not be so judgmental on myself.

I’d read this post before but the Stimtastic stuff brought me back here and this is the first time I’ve read through all the comments.

Firstly, thank you for a great post. And I totally agree with you that as autistic adults we can work towards feeling more comfortable with being openly autistic, including stimming in public, so that what is normal for us becomes socially acceptable for others. I like your parallels with sign language and wheelchair use – stimming is often a very necessary support, a key coping strategy in a world designed by and for the majority. I also think there are parallels with, for example, gay couples holding hands in public – stimming can be a means of communication, a way to express our feelings – your story about flapping at your daughter in the airport illustrates this beautifully.

Secondly, I have been thinking a lot lately about my stimming, or rather my lack of stimming. I have come to the conclusion that I have been suppressing my stims for very many years, and that this has been extremely detrimental. All my life, I have been described as ‘highly strung’, ‘like a coiled spring’. Massage therapists have commented on how much tension I store in my body, my pilates teacher talks about the ‘ropes of steel’ in my neck. About ten years ago, I developed costocondritis (inflammation of the connective tissue in the rib cage) which is known to be stress and tension related.

When I first figured out that I’m autistic, I was rather puzzled by my apparent lack of stims. Then I became aware that I tend to sit hunched with my legs crossed and any free hands wedged between or under them. And I realised that certain activities, which I find very soothing, could perhaps be viewed as a form of stimming – for example, pilates exercises, knitting, spending hours picking the varnish off an old table with my fingernail(!) Since then, I have begun to allow myself to stim a little. At first, as soon as I became aware that I was doing it, I stopped myself – I couldn’t help it, I just had to stop. Gradually I am learning to let it happen. And the tension in my body is gradually subsiding. And the costocondritis is easing up. And I am feeling very much better for it!

Now I am trying to figure out when and why I began to suppress my stims so thoroughly. I don’t recall being told not to flap or twirl or whatever. Was it self-imposed through a desire to ‘pass’ or as a result of bullying? Was it a consequence of my undiagnosed mother’s extreme visual and auditory sensitivities? For the moment, it’s a mystery.

My daughter’s stims are a delight! I am learning from her all the time…

Urgh! Despite rereading my post several times before I hit the send button, I am now finding fault with it. Wish I could edit. Of course, sign language is a means of communication, and hand holding an expression of feelings. Clearly it is too late at night for me to be attempting to write stuff! Apologies!

Oh my gosh, can I relate to what you’re saying. I actually had a massage therapist scold me for not relaxing and “fighting” her during the massage and my yoga teacher outright suggested therapy. 😀

I hadn’t until just this moment connected those things to the way that I also sit on hands or feet instinctively. I have no idea when or why I learned to suppress my stims either, but I’ve been so happy to get them back, even at this late point in my life.

Would you mind if I posted the second and third paragraphs (along with those last two awesome sentences!) of your comment to the Stimming Blog on Stimtastic? I would love for there to be some original content on the blog from autistic adults talking about exactly this subject because it feels really important for both other adults and parents of autistic kids to understand. I could do it using your username or any other way of crediting you that you’d prefer.

I’ve had back problems from primary school, most of them related to horrible tension and the resulting basic impossibility for me to strengthen my back, (aggravated through the fact the physiotherapist only did massage therapy and no exercises at all.)

I am starting to wonder if there is a connection.
You may have just explained my life.

Perhaps look into pilates? With someone who is fully trained and does equipment-based training, not just a group mat class in the local gym. It is truly holistic, soothes and strengthens both mind and body with careful exercises requiring a meditation-like focus to perform them with precision.

Meditation and me is a somewhat volatile combination, I was conditioned as a child to hate most kinds of guided meditation – don’t want to trigger anyone, so I won’t give details here – which is why I am somewhat apprehensive faced with anything related to it.
But what you said so far does sound interesting.
We could take this to e-mail to talk more about it if you’d like – you can click on my name to get to the blog, and on the about-page you’ll find my e-mail-address.

And this is how you show a lack of empathy, by refusing to acknowledge how acutely embarrassing it is to parents for our children to be bouncing on the balls of their feet in a weird manner. Who cares if it’s for sensory regulation purposes? It hurts us even though it causes no harm, so it needs to stop! Any resulting meltdowns can be put down just as hard. /s
(What was that that Simon Baron-Cohen was blethering on about in regards to Theory of Mind and cognitive empathy? It can be done with effort!)

Well, I would have thought most people are intelligent enough to recognise a paraphrased version of ‘Think of the Children‘ even if they missed the sarc mark (through tiredness or whatever), but if you genuinely feel it necessary to make it even clearer, I have no problem. (Yes, I’m holding my hand up to what I did.)

. . . a few days ago I was discussing Asperger’s with a friend of mine at his workplace desk, and told him about one of the tests. He was intrigued by & incredulent about my self-diagnosis.
He immediately wanted to do the test so I told him how to find it.
He chose the test that shows NT on one side & Asperger’s on the other side of the multi-coloured ‘spider’s web’, 154 Q’s.
He answered the questions along and we laughed at things we recognized in each other and ourselves. I was in a chair next to him leaning-in as he read each question aloud and clicked his answer.
Then he came to the question;
‘Do you rock when your nervous or (etc).?’
He immediately clicked no, and then he laughed and said, ‘But YOU do because you’ve been rocking ever since we started this test!’
?
!
And I had not even noticed or realized this!
Btw, he scored about evenly – some NT traits some Aspie traits, but I suggested he might go back and retake the test alone bc my presence might have influenced his answers . . . altho’ he read & answered quite quickly.

I tap out flute fingerings on my desk! I hate “quiet hands”-ing like the plague because it feels like wearing a noose. I’m sorry for the graphic imagery, but that is the most accurate thing I can think of!

Thanks for another brilliant blog. Just 2 comments. (1) I don’t know whether using a social script could work for adults in stimming situations? It does work for me as a parent. My teenage son is not embarrassed/ashamed of stimming; we have a social script – pre-planned. Whenever he enters a building, he will rush off to look for the lift so he could press the button & feel it moving within (or stay out to stare at it moving if the lift is glass). Repeat. A security guard would eventually approach us to stop him. My son can’t help but blurt out with volume, glee & without any inhibition whatsoever: ‘I’m obsessed with lifts!’ To which I’d reply [my script] to the guard: ‘He’s disabled. Is there a problem?’ The answer is often: No problem, madam. Sometimes a guard would blame his complaint on customers. Then one could ask which one so I could enlighten him/her. The idea/intended solution is to assert to those easily offended that, for autistic persons, stimming cannot be helped, & to educate/explain that even if one tries hard to suppress, that apparent self-control would certainly result in mental health issues. That is the shocking truth. Having said that, on the above observation, I must differ: (2) some people do stare, I assure you, when we use sign language on the bus/tube. Fortunately, staring doesn’t necessarily mean anything negative. Our perception could be broader & as generous as others’ compassion. They are probably not, being rude/condemning; they could be just plain puzzled / curious / wholly ignorant – not having read these informative blogs. Some even stare & then nod – sympathetically.

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

Related

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

Related

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.